Can Parents Refuse a Potentially Lifesaving Transplant for Severe Combined Immunodeficiency?
If untreated, most children with severe combined immunodeficiency disorder (SCID) will die of complications of infection within the first 2 years of life. Early hematopoietic stem cell transplant (HSCT) is the current standard of care for this disease. Although potentially lifesaving, prognosis of HSCT in SCID is variable depending on a number of host and donor factors. Of the survivors, many develop secondary problems such as chronic graft-versus-host disease or even second malignancies. Posttransplant care is complex and requires great effort from parents to adhere to difficult treatment regimens. In this article, we address the difficult ethical question of what to do if parents choose not to have their child with SCID undergo HSCT but prefer palliative care.
Division of Allergy, Pulmonary, Critical Care, Department of Pediatrics, Department of Medicine, Center for Biomedical Ethics and Society, Vanderbilt University, Nashville, Tennessee; anickels@alumni.nd.edu.
Andrew S
AS
Nickels
Department of Pediatrics, Children's Mercy Hospital, University of Missouri, Kansas City, Missouri;
G Douglas
GD
Myers
Department of Hospital Medicine, St. Jude Children's Research Hospital, Memphis, Tennessee; and.
Liza-Marie
LM
Johnson
Division of Pediatric Allergy/Immunology, Department of Pediatric and Adolescent Medicine, and.
Avni
A
Joshi
Biomedical Ethics Research Program, Mayo Clinic, Rochester, Minnesota.
Richard R
RR
Sharp
Department of Pediatrics, Children's Mercy Hospital, University of Missouri, Kansas City, Missouri;
John D
JD
Lantos
D001294:Attitude to Health; D006801:Humans; D007223:Infant; D008297:Male; D010290:Parents / Q000523:psychology*; D016511:Severe Combined Immunodeficiency / Q000601:surgery*; D016312:Treatment Refusal / Q000941:ethics*