Jump to ContentJump to Main Navigation
The Edge of MedicineStories of Dying Children and Their Parents$

David J. Bearison

Print publication date: 2012

Print ISBN-13: 9780195389272

Published to Oxford Scholarship Online: September 2012

DOI: 10.1093/acprof:oso/9780195389272.001.0001

Show Summary Details
Page of

PRINTED FROM OXFORD SCHOLARSHIP ONLINE (www.oxfordscholarship.com). (c) Copyright Oxford University Press, 2017. All Rights Reserved. Under the terms of the licence agreement, an individual user may print out a PDF of a single chapter of a monograph in OSO for personal use (for details see http://www.oxfordscholarship.com/page/privacy-policy). Subscriber: null; date: 23 November 2017

(p.197) References

(p.197) References

Source:
The Edge of Medicine
Publisher:
Oxford University Press

Bibliography references:

Abrams, R. D. (1966). The patient with cancer—his changing pattern of communication. New England Journal of Medicine, 274, 317–322.

Ahronheim, J. C., Meier, D. E., Morris, J., & Morrison, R. S. (No date). Palliative medicine in the acute care hospital: A model for education, professional development and clinical care; and letter of intent: Project on Death in America—unpublished.

American Academy of Pediatrics, Committee on Bioethics (1996). Ethics and the care of critically ill infants and children. Pediatrics, 93, 149–152.

American Academy of Pediatrics Committee on Bioethics and Committee on Hospital Care: Palliative Care for Children (2000). Pediatrics, 106, 351–357.

American Psychological Association Working Group on Assisted Suicide and End-of-Life Decisions. (2000). Report to the Board of Directors of the American Psychological Association. Washington, DC: American Psychological Association.

Arias, E., MacDorman, M. F., Strobino, D. M., & Guyer, B. (2002). Annual summary of vital statistics. Pediatrics, 112, 1215–1230.

(p.198) Bakhtin, M. M. (C. Emerson & M. Holquist, Eds.) (1986). Speech genres and other late essays (V. W. McGee, Trans.). Austin, TX: University of Texas Press.

Barnard, D., Towers, A., Boston, P., & Lambrinidou, Y. (2000). Crossing over: Narratives of palliative care. New York: Oxford University Press.

Bearison. D. J. (1991). They never want to tell you: Children talk about cancer. Cambridge, MA: Harvard University Press.

Bearison, D. J. (2006). When treatment fails: How medicine cares for dying children. New York: Oxford University Press.

Bearison, D. J., Cohen, I. T., Kazak, A. E., Meyer, C., Sourkes, B. M., & Walco, G. W. (2005). Report of the Children and Adolescents Task Force of the Ad Hoc Committee on End-of-Life Issues. Washington, DC: American Psychological Association.

Bearison, D. J., & Dorval, B. (2001). Collaborative cognition: Children negotiating ways of knowing. Westport, CN: Ablex.

Bearison, D. J. & Pacifici, C. (1989). Children's event knowledge of cancer treatment. Journal of Applied Developmental Psychology, 10, 469–486.

Bearison, D. J., Sadow, A. J., Granowetter, L., & Winkel, G. (1993). Patients’ and parents’ causal attributions for childhood cancer. Journal of Psychosocial Oncology, 11, 47–61.

Beauchamp, T. L., & Childress, J. F. (1994). Principles of biomedical ethics (4th ed.). Oxford, England: Oxford University Press.

Becker, E. (1973). The denial of death. New York: Simon & Schuster

Bluebond-Langer, M. (1978). The private worlds of dying children. Princeton, NJ: Princeton University Press.

Bluebond-Langer, M. & DeCic/co, A. (2006). Children's views of death. In A. Goldman, R. Hain, & S. Liben (Eds.), Oxford textbook of palliative care for children (pp. 85–94). New York: Oxford University Press.

Brody, H. (2003). Stories of sickness (2nd. ed.). New York: Oxford University Press.

Bruner, J. (1986). Actual minds, possible worlds. Cambridge, MA: Harvard University Press.

(p.199) Bruner, J. (2002). Making stories: Law, literature, life. New York: Farrar, Straus, & Giroux.

Bury, M. (2001). Illness narratives: Fact or fiction. Sociology of Health and Illness, 23, 263–285.

Callahan, D. (1993). The troubled dream of life: Living with mortality. New York: Simon & Schuster.

Callahan, D. (2009). Taming the beloved beast: Why medical technology costs are destroying our health care system. Princeton, NJ: Princeton University Press,

Carpenter, P. J., & LeVant, C. S. (1994). Sibling adaptation to the family crises of childhood cancer. In. D. J. Bearison & R. K. Mulhern, Pediatric psycholooncology: Psychological perspectives on children with cancer. New York: Oxford University Press.

Carter, B. S., Howenstein, M., Gilmer, M. J., Throop, P., France, D., & Whitlock, J. A. (2004). Circumstances surrounding the death of hospitalized children: Opportunities for pediatric palliative care. Pediatrics, 114, 361–366.

Charon, R. (2007). Narrative medicine: Honoring the stories of medicine. New York: Oxford University Press.

Child Life Council. Retrieved from http://www.childlife.org.

Children's Oncology Group, Task Force on End-of-Life Care. (2001, October). Unpublished semi-annual meeting, San Antonio, TX.

Cleeland, C. S., Gonin, R., Hatfield, A. et al. (1994). Pain and its treatment in outpatients with metastatic cancer. New England Journal of Medicine, 330, 592–596.

Collins, J. J. (2003). Current status of symptom measurement in children. In R. K. Portenoy & E. Breweri, Issues in palliative care research. New York: Oxford University Press.

Collins, J. J. (2004). Paediatric palliative medicine: Symptom control in life-threatening illness. In D. Doyle, G. Hanks, N. I. Cherny, & K. Calman (Eds.), Oxford textbook of palliative medicine (3rd ed., pp. 789–798). Oxford, England: Oxford University Press.

(p.200) Cook, R. (2001). Dr. Folkman's war. New York: Random House.

Council on Ethical and Judicial Affairs of the American Medical Association. (1991). Pediatrics and the patient self-determination act. Pediatrics, 1265, 1868–1871.

Curnick, S. (2007). Review of When treatment fails: How medicine cares for dying children. Palliative Medicine, 21, 451.

Daugherty, C., Ratain, M. J., Grochowski, E., Stocking, C., Kodish, E., Mick, R., & Siegler, M. (1995). Perceptions of cancer patients and their physicians involved in phase I trials. Journal of Clinical Oncology, 13, 2476.

Didion, J. (1979). The white album. New York: Simon & Schuster.

Dineson, I. (1934). Seven gothic tales. New York: Modern Library.

Dresser, R. (2009). Substituting authenticity for autonomy. Hastings Center Report, 39, 3.

Dubler, N. (2005). Conflict and consensus at end of life. In B. Jennings, G. Kaebnick, & T. Murray, Improving end of life care. Garrison, NY: Hastings Center.

Feifel, H. (1986). In F. Wald (Ed.), In the quest of the spiritual component of care for the terminally ill (pp. 15–22). New Haven, CT: Yale School of Nursing

Ferrell, B. (2003, November). End of Life Nursing Education Consortium (ELNEC): National efforts to improve pediatric palliative care. Paper presented at the meeting of the Initiative for Pediatric Palliative Care, New York, NY.

Feudtner, C., Silveira, M. J., & Christakis, D. A. (2002). Where do children with complex chronic conditions die? Patterns in Washington State, 1980–1998. Pediatrics, 109, 6576–6660.

Field, M. J., & Cassel, C. K. (Eds.) (1997). Approaching death: Improving care at the end of life. Washington, DC: National Academy Press.

Fleck, L. M. (2010). Personalized medicine's ragged edge, Hastings Center Report, 40, 16–18.

Frankl, V. (1959). Man's search for meaning. Boston: Beacon Press.

(p.201) Freud, S. (1918). Reflections on war and death. (A. A. Brill & A. B. Kullnew, Trans.). New York: Moffat, Yard.

Freud, S. (1959). Collected papers, Vol. 1 (J. Riviere, Trans.). New York: Basic Books.

Freyer, D. R. (1992). Children with cancer: Special considerations in the discontinuation of life-sustaining treatment. Medical and Pediatric Oncology, 20, 136–142.

Fürst, C. J., & Doyle, D. (2004). The terminal phase. In Doyle, D., Hanks, G., Cherny, N., & Calman, K. (Eds.), Oxford textbook of palliative medicine, 3rd ed. (pp. 1117–1134). New York: Oxford University Press

Gawande, A. (2002). Complications: A surgeon's notes on an imperfect science. New York: Henry Holt.

Gawande, A. (2010, August 2). Letting go. The New Yorker.

Glaser, G. B., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine.

Gogan, J. L., Koocher, G. P., Fine, W. E., Foster, D. J., & O'Malley, J. E. (1979). Pediatric cancer survival and marriage: Issues affecting adult adjustment. American Journal of Orthopsychiatry, 49, 423–430.

Goldman, A., & Christie, D. (1983). Children with cancer talk about their own death with their families. Pediatric Hematology Oncology, 10, 223–232.

Gould, S. J. (2003). The hedgehog, the fox and the magister's pox: Mending the gap between science and the humanities. New York: Harmony Books.

Heidegger, M. (1962). Being in time (8th ed). (J. Macquarre & E. Robinson, Trans). London: Blackwell.

Hilden, J. M., Emmanuel, E. J., Fairclough, D. L., Link, M. P., Foley, K. M., Clarridge, B. C., Schnipper, L. E., & Mayer, R. J. (2001). Attitudes and practices among pediatric oncologists regarding end-of-life care: Results of the 1998 American Society of Clinical Oncology Survey. Journal of Clinical Oncology, 19, 205–212.

(p.202) Hilden, J. & Tobin, D. R. (2003). Shelter from the storm: Caring for a child with a life-threatening condition. Cambridge, MA: Perseus.

Hoffman, S., & Strauss, S. (1985). The development of children's concepts of death. Death Studies, 9, 469–482.

Hunter, K. M. (1991). Doctors’ stories: The narrative structure of medical knowledge. Princeton, NJ: Princeton University Press.

Husserl, E. (1990). Ideas pertaining to a pure phenomenology and to a phenomenological philosophy. New York: Springer.

Institute of Medicine. (1997). Approaching death: Improving care at the end of life. Washington, DC: Institute of Medicine.

Institute of Medicine. (1999). Ensuring quality cancer care. Washington, DC: Institute of Medicine.

Institute of Medicine of the National Academies. (2003). When children die: Improving palliative and end-of-life care for children and their families. Washington, DC: National Academies Press.

Jenkins, V., Solis-Trapala, I., Langridge, C., Catt, S., Talbot, D. C., & Fallowfield, L. J. (2011). What oncologists believe they said and what patients believe they heard: An analysis of phase 1 trial discussions. Journal of Clinical Oncology, 29, 61–68.

Johnson, M (1987). The body in the mind: The bodily basis of meaning, imagination and reasoning. Chicago: University of Chicago Press.

Kaufman, S. R. (2005). And a time to die: How American hospitals shape the end of life. New York: Scribner.

Koocher, G. (1973). Childhood death and cognitive development. Developmental Psychology, 9, 369–375.

Koocher, J. P. (1974). Talking with children about death. American Journal of Orthopsychiatry, 44, 404–408.

Kreicbergs, U., Valdimarsdottir, U., Onelov, E., Henter, J., & Steineck, G. (2004). Talking about death with children who have severe malignant disease. New England Journal of Medicine, 351, 1175–1186.

Kubler-Ross, E. (1974). Questions and answers on death and dying. New York: Simon & Schuster.

(p.203) Kubler-Ross, E. (1983). On children and death. New York: MacMillan.

Kushner, H. (1981). When bad things happen to good people. New York: Schocken.

Langer, S. (1967) Mind: An essay on human feeling. Baltimore: Johns Hopkins University Press.

Lazar, A., & Torney-Purta, J. (1991). The development of the subconcepts of death in young children: A short-term longitudinal study. Child Development, 62, 1321–1333.

Leikin, S. (1989). A proposal concerning decisions to forgo life-sustaining treatment for young people. Journal of Pediatrics, 115, 17–22.

Levine, A. D. (2010). Self-regulation, compensation and the ethical recruitment of oocyte donors. Hastings Center Report, 40, 25–36.

Lim. D. (1909, October 25). The real life of snowflakes and swans. The New York Times (p. 11AR).

Ljungman, G., Gordh, T., Sorensen, S., & Kreuger, A. (2000). Pain variations during cancer treatment in children. Pediatric Hematology Oncology, 17, 211–221.

Lucey, J. F. (2006). When treatment fails. Pediatrics, 117, 1234.

Luria, A. R. (1987). The man with a shattered world: The history of a brain wound and the mind of a mnemonist: A little book about memory. Cambridge, MA: Harvard University Press.

Lynn, J. (2005). Improving end of life care. Hastings Center Report, 35, S14.

Maguire, P. (2000). Communication with terminally ill patients and their relatives. In H. M. Chochinov & W. Breitbart (Eds.), Handbook of psychiatry in palliative medicine (pp. 291–301). New York: Oxford University Press.

Mead, G. (1962). Mind, self and society. Chicago: University of Chicago Press

Meyer, E. (2007). Review of When Treatment Fails: How Medicine Cares for Dying Children. Journal of the American Medical Association, 298, 2313–2314.

(p.204) National Cancer Institute (2010). Surveillance, epidemiology and end results. Available at http://seer.cancer.gov

Nelson, H. L. (Ed.). (1997). Stories and their limits: Narrative approaches to bioethics. New York: Routledge.

NHPCO facts and figures. Alexandria, VA: National Hospice and Palliative Care Organization, July 2003. Accessed April 26, 2004 at http://www.nhpco.org/templates/1/homepage.cfm

Nitschke, R. (2000). Regarding guidelines for assistance to terminally ill children with cancer: Report of the SIOP Working Committee on psychosocial issues in pediatric oncology. Medical and Pediatric Oncology, 34, 271–273.

Nuland, S. (1994). How we die: Reflections on life's final chapter. New York: Knopf.

Pensack, R., & Williams, D. (1994). Raising Lazarus. New York: Putnam.

O'Brien, G. (20012). Crazy horse: A film by Frederick Weiseman. New York Review of Books, 59, 20–21.

Perrin, J., Bloom, S., & Gortmaker, S. (2007). The increase of childhood chronic conditions in the United States. Journal of the American Medical Association, 297, 2755–2759.

Portenoy, R. K., & Bruera, E. (Eds.) (2003). Issues in palliative care research. New York: Oxford University Press.

Rabow, M. W., Hardie, G. E., Fair, J. M., & McPhee, S. J. (2000). End-of-life case content in 50 textbooks from multiple specialties. Journal of the American Medical Association, 283, 771–778.

Ricouer, P. (1984). Time and narrative: Volume 1. Chicago: University of Chicago Press.

Sacks, O. (1986). The man who mistook his wife for a hat and other clinical tales. New York: Summit.

Sahler, O. J., Frager, G., Leveton, M., Cohn, F., & Lipson, M. (2000). Medical education about end-of-life care in the pediatric setting: Principles, challenges and opportunities. Pediatrics, 105, 575–584.

(p.205) Sargent, J. R., Roghmann, K. J., Mulhern, R. K., Barbarian, O., Carpenter, P. J., Copeland, D. R., Dolgin, M. J., & Zeltzer, L. K. (1995). Sibling adaptation to childhood cancer collaborative study: Siblings’ perceptions of the cancer experience. Journal of Pediatric Psychology, 20, 151–164.

Schneider, C. E. (1998). The practice of autonomy: Patients, doctors, and medical decisions. New York: Oxford University Press.

Shah, S., Weitman, S., Langevin, A. M., Bernstein, M., Furman, W., & Pratt, C. (1998). Phase I therapy trials in children with cancer. Journal of Pediatric Hematology and Oncology, 20, 431–438.

Spence, D. P. (1982). Narrative truth and historical truth: Meaning and interpretation in psychoanalysis. New York: Norton.

Solomon, M. Z., Dokken, D. L., Fleischman, A. R., Heller, K., Levetown, M., Rushton, C. H., Sellers, D. E., & Truog, R. D. (2002). The Initiative for Pediatric Palliative Care (IPPC): Background and Goals. Newton, MA: Education Development Center. Available at http://www.ippcweb.org/initiative.asp.

Sontag, S. (1978). Illness as metaphor. New York: Farrar, Straus & Giroux.

Sourkes, B. M. (1995). Armfuls of time: The psychological experience of the child with a life threatening illness. Pittsburgh: University of Pittsburgh Press.

Sourkes, B. M. (2000). Psychotherapy with the dying child. In H. M. Chochinov & W. Breitbart (Eds.), Handbook in palliative medicine (pp. 265–272). New York: Oxford University Press.

Spier, M. M. (1999). The language of loss: Communication between dying children and their parents (Unpublished doctoral dissertation). New York: City University of New York.

Spinetta, J. J. (1980). Disease related communication: How to tell. In J. Kellerman (Ed.), Psychological aspects of childhood cancer (pp. 190–224). Springfield, IL: Thomas.

Spinetta, J. J., & Maloney, L. (1975). Death anxiety in the outpatient leukemic child. Pediatrics, 56, 1034–1037.

(p.206) Wiener, J. M. (1970). Attitudes of pediatrians toward the care of fatally ill children. Journal of Pediatrics, 5, 700–705

Wilkinson, S. (1991). Factors which influence how nurses communicate with cancer patients. Journal of Advanced Nursing, 16, 677–688.

Wilson, E. O. (1998). Consilience. New York: Knopf.

Wolfe, J. (2004). Should parents speak with a dying child about impending death? New England Journal of Medicine, 351, 1251–1253.

Wolfe, J., Grier, H. E., Klar, N., Levin, S. B., Ellenbogen, J. M., Salem-Schatz, S., Emanuel, E. J., & Weeks, J. C. (2000). Symptoms and suffering at the end of life in children with cancer. New England Journal of Medicine, 342, 326–333.

Wolfe, J., Klar, N., Grier, H. E., Duncan, J., Salem-Schatz, S., Emanuel, E. J., & Weeks, J. C. (2000). Understanding of prognosis among parents of children who died of cancer: Impact on treatment goals and integration of palliative care. Journal of the American Medical Association, 284, 2469–2475.

Yurkiewicz, M. (2001). The prospects for personalized medicine. Hastings Center Report, 31, 14–16.

Zimmer, C. (2003, Sept. 28). What if there is something going on in there? The New York Times Magazine, 52–56.