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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. 1 Pediatrics, University of Washington, Seattle, WA, USA
  2. 2 Seattle Children's Hospital, Seattle, WA, United States
  3. 3 University of Washington, Seattle, Washington, USA
  4. 4 Seattle Children's Hospital, Seattle, WA, United States
  5. 5 Pediatrics, Seattle Children's Hospital, Seattle, Washington, USA
  6. 6 Seattle Children's Hospital, Seattle, WA, United States
  7. 7 Pediatrics, Northwestern Feinberg School of Medicine, Chicago, IL, United States
  8. 8 Lurie Children's Hospital, Chicago, IL, United States
  9. 9 Pediatrics, Ann and Robert H Lurie Children's Hospital of Chicago, Chicago, Illinois, USA
  10. 10 Lurie 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 representative of the true population, it is not clear from the results reported that ‘most people agree’ with any scenario presented. In cases where the majority supported withdrawal versus continued treatment, there was a reasonable distribution across perspectives. In only the ‘unaware’ and ‘possible awareness’ cases did the majority of respondents concur with withdrawal, and in these two situations, the majority was just over half of the sampled population. Moreover, the demonstrated statistically significant correlations between support for treatment withdrawal and ethical motivations for these choices were uniformly weak to poor correlations (Spearman’s correlation coefficients 0.1–0.3).2 The authors’ claim that their “findings indicate that in the most severe cases most people agree that life is not worth living for a profoundly disabled infant” overstates the implications of their results. Further, the weak correlations suggest that other factors may be more important drivers of participants’ perspectives, such as the potential for forming meaningful relationships (or ‘relational potential’), which was underexplored in this study.

In addition, as the authors note, it is challenging to apply a best interest standard to guide decision-making for children with profound disability because it requires imagining what life is like from the perspective of the child. Too often in these cases, those asked to interpret the interests of the child instead consider how they would perceive the benefits and burdens of continued existence were they to lose their own capacities.3 4 As John Robertson recognised, this may not reflect the child’s own lived experience with disability.3 “While one who has known these capacities may prefer death to a life without them, we have no assurance that the handicapped person, with no point of comparison, would agree. Life, and life alone, whatever its limitations, might be of sufficient worth to him”.3 While this observation may not necessarily provide clear evidence that life-sustaining treatment must or should be provided, Robertson’s critique should give pause in overly interpreting the views of others regarding the quality of a life with disability (even a profound cognitive disability), particularly if those others have had little personal experience with disability.

In cases of profound disability, where it is difficult to determine the best interests of the child, John Arras argued that consideration of only the child’s self-regarding interests might be reduced to an assessment of the relative pain of treatment versus non-treatment.4 5 Arras argued that for such children, by narrowing the range of meaningful data to the presence or absence of unrelievable pain, the best interest standard has been “pushed beyond the pale of its capabilities” and “conflicts with moral common sense”.5 Arras proposed moving beyond considering the individual’s interests alone to take into account the potential for human relationships as central in what he termed a relational potential standard.4

We would argue that one of the most important implications from this study is that members of the public may place great value on the capacity to develop meaningful human relationships. Respondents favoured continued treatment in the vignette where the authors offered that the child had the capacity to develop meaningful human relationships. In addition, respondents also showed significant deference to parents who expressed preferences for life-sustaining treatments in other vignettes. We view this finding as evidence of the respondents’ more general recognition of the moral value of caring relationships, particularly that between child and parent, and this may serve as a justification to support parental requests for interventions that go beyond comfort care. The public may hold a more inclusive interpretation of valued human relationships, even including those characterised by ‘minimal cognition’ or a lack of awareness, which may be more consistent with a recently proposed expansion and revision of the relational potential standard.6

Instead of focusing on a certain threshold of capability of an individual, the relational potential standard honours the capacity for a caring relationship to flourish, even if it appears largely one-sided to an outside observer.6 The value of relationships cannot be accounted for by individualistic frameworks such as a best interest standard because the health and well-being of the individual in the context of relationship with others also matters. Ultimately, once weighed against other considerations, including burden placed on the child and available societal resources, recognition of relational potential may support clinicians in actualising parents’ request for medical interventions that go beyond comfort care.6

In this study, the authors described relational capacity as only possible in a single vignette. This narrow interpretation of relational capacity may not match the threshold proposed by Arras, but more importantly, may not reflect the public’s or parents’ interpretation of a meaningful human relationship.4 6 While recognition of a broader relational potential may be supported by the observed deference to parents, it would have been interesting to see if the results would have been different had the authors offered a more inclusive interpretation of relational capacity. Recognition of value of relationships suggest a need to shift our focus in both ethics and public policy; from identifying a ‘life not worth living’ and the limitations, burdens or costs of children with profound disabilities to also considering their value, benefits and contributions.

References

Footnotes

  • Contributors AW participated in conceptualisation of the project and wrote the first draft of the manuscript. BSW provided input into conceptualisation and on several drafts of the manuscript. DD provided feedback on several drafts of the manuscript. EP provided feedback on several drafts of the manuscript. SS participated in conceptualisation of the project overall and substantial edits to several drafts of the manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; internally peer reviewed.

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