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Relationships help make life worth living
  1. Aaron Wightman1,2,
  2. Benjamin S Wilfond3,4,
  3. Douglas Diekema5,6,
  4. Erin Paquette7,8,
  5. Seema Shah9,10
  1. 1Pediatrics, University of Washington, Seattle, WA, USA
  2. 2Seattle Children's Hospital, Seattle, WA, United States
  3. 3University of Washington, Seattle, Washington, USA
  4. 4Seattle Children's Hospital, Seattle, WA, United States
  5. 5Pediatrics, Seattle Children's Hospital, Seattle, Washington, USA
  6. 6Seattle Children's Hospital, Seattle, WA, United States
  7. 7Pediatrics, Northwestern Feinberg School of Medicine, Chicago, IL, United States
  8. 8Lurie Children's Hospital, Chicago, IL, United States
  9. 9Pediatrics, Ann and Robert H Lurie Children's Hospital of Chicago, Chicago, Illinois, USA
  10. 10Lurie Children's Hospital, Chicago, IL, United States
  1. Correspondence to Prof. Seema Shah; Seshah{at}luriechildrens.org

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Decisions regarding life-sustaining medical treatments for young children with profound disabilities can be extremely challenging for families and clinicians. In this study, Brick and colleagues1 surveyed adult residents of the UK about their attitudes regarding withdrawal of treatment using a series of vignettes of infants with varying levels of intellectual and physical disability, based on real and hypothetical cases.1 This is an interesting study on an important topic. We first highlight the limitations of using these survey data to inform public policy and then offer a different interpretation from the authors’ regarding their findings about the value the public appears to place on relational capacity.

The authors asked members of the lay public to interpret a disabled child’s best interest in a series of vignettes. The respondents were 92% white; 59% were atheist or reported no religious affiliation. Though the authors note this lack of diversity as a limitation, we would add that this limitation is particularly problematic in this context. Minority views on this issue may differ significantly from the majority perspective. When the stakes are high (as is the case for questions about withdrawing life-sustaining therapy from infants over parental objections), use of public opinion data to directly inform policy requires, at a minimum, a representative sample reflecting both the true diversity of views within the public and a method to justly account for the alternate views of the minority.

Even if the sampled population were more …

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