Shared medical decision‐making: considering what options to present based on an ethical analysis of the treatment of brain tumors in very young children

The treatment of brain tumors in very young children poses both a therapeutic challenge and a bioethical quandary. The administration of craniospinal radiation after surgery offers the greatest chance for cure but causes severe neurocognitive damage. As a result, current practice does not offer parents the option of full‐dose postoperative craniospinal radiation. Some may regard this approach as inappropriate medical paternalism, while others may consider it an example of responsible therapeutics. Evaluation of this dilemma reveals principles which can guide clinicians in determining which treatment options to present to their patients or surrogates, in the context of shared medical decision‐making. Pediatr Blood Cancer 2012;59:216–220. © 2012 Wiley Periodicals, Inc.

[1]  HUMANITARIAN ACTORS,et al.  Do no harm , 2013, Nature Biotechnology.

[2]  Douglas C. Miller,et al.  Histology predicts a favorable outcome in young children with desmoplastic medulloblastoma , 2011, Cancer.

[3]  Annette Rid,et al.  Systematic Review: The Effect on Surrogates of Making Treatment Decisions for Others , 2011, Annals of Internal Medicine.

[4]  F. Barg,et al.  Contrasting Parents' and Pediatricians' Perspectives on Shared Decision-Making in ADHD , 2011, Pediatrics.

[5]  Glyn Elwyn,et al.  Implementing shared decision making in the NHS Creation of a platform of tools to provide information to doctors and patients should be the first step in giving patients choice about their treatment , say , 2010 .

[6]  A. Jemal,et al.  Cancer Statistics, 2010 , 2010, CA: a cancer journal for clinicians.

[7]  E. Bouffet.  Medulloblastoma in infants: the critical issues of the dilemma. , 2010, Current oncology.

[8]  C. Hawkins,et al.  Impact of radiation avoidance on survival and neurocognitive outcome in infant medulloblastoma , 2009, Current oncology.

[9]  J. McAdam,et al.  Symptoms experienced by family members of patients in intensive care units. , 2009, American journal of critical care : an official publication, American Association of Critical-Care Nurses.

[10]  L. Lafay-Cousin,et al.  Current treatment approaches for infants with malignant central nervous system tumors. , 2009, The oncologist.

[11]  R. Packer,et al.  Management of and prognosis with medulloblastoma: therapy at a crossroads. , 2008, Archives of neurology.

[12]  T. Merchant,et al.  Predicting change in academic abilities after conformal radiation therapy for localized ependymoma. , 2008, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[13]  W. Reddick,et al.  Understanding the cognitive impact on children who are treated for medulloblastoma. , 2007, Journal of pediatric psychology.

[14]  Douglas C. Miller,et al.  Multiagent chemotherapy and deferred radiotherapy in infants with malignant brain tumors: a report from the Children's Cancer Group. , 2005, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[15]  R. Mulhern,et al.  Neurocognitive consequences of risk-adapted therapy for childhood medulloblastoma. , 2005, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[16]  D. Frappaz,et al.  Treatment of medulloblastoma with postoperative chemotherapy alone: an SFOP prospective trial in young children. , 2005, The Lancet. Oncology.

[17]  Elizabeth H Bradley,et al.  Understanding the treatment preferences of seriously ill patients. , 2002, The New England journal of medicine.

[18]  X Xiong,et al.  Survival and neurodevelopmental outcome of young children with medulloblastoma at St Jude Children's Research Hospital. , 1999, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[19]  L. Ross.  Children, Families, and Health Care Decision Making , 1999 .

[20]  H. Böttcher,et al.  Survival of very young children with medulloblastoma (primitive neuroectodermal tumor of the posterior fossa) treated with craniospinal irradiation. , 1998, International journal of radiation oncology, biology, physics.

[21]  J L Kepner,et al.  Neuropsychologic functioning of survivors of childhood medulloblastoma randomized to receive conventional or reduced-dose craniospinal irradiation: a Pediatric Oncology Group study. , 1998, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[22]  L. Degner,et al.  Preferences for Participation in Treatment Decision Making and Information Needs of Parents of Children With Cancer: A Pilot Study , 1998, Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses.

[23]  S. Wellek,et al.  Prospective randomised trial of chemotherapy given before radiotherapy in childhood medulloblastoma. International Society of Paediatric Oncology (SIOP) and the (German) Society of Paediatric Oncology (GPO): SIOP II. , 1995, Medical and pediatric oncology.

[24]  M E Cohen,et al.  Postoperative chemotherapy and delayed radiation in children less than three years of age with malignant brain tumors. , 1993, The New England journal of medicine.

[25]  J. Hirsch,et al.  Medulloblastoma in childhood: progressive intellectual deterioration , 1990, Child's Nervous System.

[26]  L. Forrow,et al.  Deciding for others: The ethics of surrogate decision‐making , 1990 .

[27]  A R Jonsen,et al.  Do no harm. , 1978, Annals of internal medicine.

[28]  R. Jenkin.  Medulloblastoma in childhood: radiation therapy. , 1969, Canadian Medical Association journal.

[29]  R. Hickman,et al.  Impact of chronic critical illness on the psychological outcomes of family members. , 2010, AACN advanced critical care.

[30]  C. Stiller.  Childhood cancer in Britain : incidence, survival, mortality , 2007 .

[31]  R. Arceci.  Treatment of Early Childhood Medulloblastoma by Postoperative Chemotherapy Alone , 2006 .

[32]  D. Diekema.  Parental refusals of medical treatment: the harm principle as threshold for state intervention , 2004, Theoretical medicine and bioethics.

[33]  N. Dubrawsky.  Cancer statistics , 1989, CA: a cancer journal for clinicians.

[34]  A. Buchanan,et al.  Medical paternalism. , 1978, Philosophy & public affairs.

[35]  Rascon.  [The National Cancer Institute]. , 1953, Boletin cultural e informativo - Consejo General de Colegios Medicos de Espana.