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Can Parents Refuse a Potentially Lifesaving Transplant for Severe Combined Immunodeficiency?

Andrew S Nickels1, G Douglas Myers2, Liza-Marie Johnson3

  • 1Division 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.

Pediatrics
|June 17, 2016
PubMed

Insights

Severe combined immunodeficiency disorder (SCID) is fatal in early childhood without treatment. This article explores the ethical considerations when parents opt for palliative care over hematopoietic stem cell transplant (HSCT) for their child with SCID.

Area of Science:

  • Immunology
  • Pediatric Hematology
  • Medical Ethics

Background:

  • Severe combined immunodeficiency disorder (SCID) is a group of rare genetic disorders characterized by profound defects in the immune system.
  • Without timely intervention, SCID is typically fatal within the first two years of life due to severe infections.
  • Hematopoietic stem cell transplant (HSCT) is the established curative treatment for SCID, but its success is influenced by various factors.

Observation:

  • HSCT, while potentially life-saving, carries risks including graft-versus-host disease and secondary malignancies.
  • Long-term post-transplant care is demanding for patients and their families, requiring significant adherence to complex treatment plans.
  • Parental decisions regarding HSCT for SCID can be complex, influenced by perceived risks, benefits, and quality of life considerations.

Findings:

  • The prognosis following HSCT for SCID is variable, depending on host and donor characteristics.
  • Survivors of HSCT may face chronic complications, necessitating ongoing medical management.
  • Ethical dilemmas arise when parents prioritize palliative care over HSCT for children with SCID.

Implications:

  • This discussion highlights the critical need for comprehensive genetic screening and early diagnosis of SCID.
  • It underscores the importance of shared decision-making between medical teams and families facing difficult treatment choices for SCID.
  • Exploring palliative care options for SCID emphasizes a patient-centered approach, focusing on quality of life and family support when curative treatments are declined.

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