Can parents refuse a potentially lifesaving transplant for severe combined immunodeficiency?

Andrew S. Nickels, G. Douglas Myers, Liza Marie Johnson, Avni Joshi, Richard R Sharp, John D. Lantos

Research output: Contribution to journalArticle

2 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Article numbere20160892
JournalPediatrics
Volume138
Issue number1
DOIs
StatePublished - Jul 1 2016

Fingerprint

Severe Combined Immunodeficiency
Hematopoietic Stem Cells
Parents
Transplants
Second Primary Neoplasms
Graft vs Host Disease
Standard of Care
Palliative Care
Survivors
Tissue Donors
Infection
Therapeutics

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

Cite this

Nickels, A. S., Myers, G. D., Johnson, L. M., Joshi, A., Sharp, R. R., & Lantos, J. D. (2016). Can parents refuse a potentially lifesaving transplant for severe combined immunodeficiency? Pediatrics, 138(1), [e20160892]. https://doi.org/10.1542/peds.2016-0892

Can parents refuse a potentially lifesaving transplant for severe combined immunodeficiency? / Nickels, Andrew S.; Myers, G. Douglas; Johnson, Liza Marie; Joshi, Avni; Sharp, Richard R; Lantos, John D.

In: Pediatrics, Vol. 138, No. 1, e20160892, 01.07.2016.

Research output: Contribution to journalArticle

Nickels, Andrew S. ; Myers, G. Douglas ; Johnson, Liza Marie ; Joshi, Avni ; Sharp, Richard R ; Lantos, John D. / Can parents refuse a potentially lifesaving transplant for severe combined immunodeficiency?. In: Pediatrics. 2016 ; Vol. 138, No. 1.
@article{52fa886a6bbf4b818c63f274c07c4394,
title = "Can parents refuse a potentially lifesaving transplant for severe combined immunodeficiency?",
abstract = "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.",
author = "Nickels, {Andrew S.} and Myers, {G. Douglas} and Johnson, {Liza Marie} and Avni Joshi and Sharp, {Richard R} and Lantos, {John D.}",
year = "2016",
month = "7",
day = "1",
doi = "10.1542/peds.2016-0892",
language = "English (US)",
volume = "138",
journal = "Pediatrics",
issn = "0031-4005",
publisher = "American Academy of Pediatrics",
number = "1",

}

TY - JOUR

T1 - Can parents refuse a potentially lifesaving transplant for severe combined immunodeficiency?

AU - Nickels, Andrew S.

AU - Myers, G. Douglas

AU - Johnson, Liza Marie

AU - Joshi, Avni

AU - Sharp, Richard R

AU - Lantos, John D.

PY - 2016/7/1

Y1 - 2016/7/1

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=84976878528&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84976878528&partnerID=8YFLogxK

U2 - 10.1542/peds.2016-0892

DO - 10.1542/peds.2016-0892

M3 - Article

VL - 138

JO - Pediatrics

JF - Pediatrics

SN - 0031-4005

IS - 1

M1 - e20160892

ER -