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Clinical ethics
Is it in the best interests of an intellectually disabled infant to die?
  1. D Wilkinson
  1. Correspondence to:
 D Wilkinson
 Mercy Hospital for Women, PO Box 5027, Heidelberg West, Victoria 3081, Australia; dwilkinson{at}mercy.com.au

Abstract

One of the most contentious ethical issues in the neonatal intensive care unit is the withdrawal of life-sustaining treatment from infants who may otherwise survive. In practice, one of the most important factors influencing this decision is the prediction that the infant will be severely intellectually disabled. Most professional guidelines suggest that decisions should be made on the basis of the best interests of the infant. It is, however, not clear how intellectual disability affects those interests. Why should intellectual disability be more important than physical disability to the future interests of an infant? Is it discriminatory to base decisions on this? This paper will try to unravel the above questions. It seems that if intellectual disability does affect the best interests of the child it must do so in one of three ways. These possibilities will be discussed as well as the major challenges to the notion that intellectual disability should have a role in such decisions. The best interests of the child can be affected by severe or profound intellectual disability. It is, though, not as clear-cut as some might expect.

  • PVS, persistent vegetative state

https://doi.org/10.1136/jme.2005.013508

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    Footnotes

    • ↵i Throughout this paper, I will be referring to “severe” and “profound” intellectual disability. I am using this terminology consistent with traditional classification of intellectual disability, albeit fairly informally. For example, the International Classification of Diseases, 10th revision, classifies severe intellectual disability as having an intelligence quotient of 20–34, and profound disability as having an intelligence quotient of <20. People with severe disability usually have impairment of motor skills, difficulty in ambulation and limited communication ability. Most of them require close supervision and care throughout life. Those with profound disability are able to achieve even rudimentary self-care tasks only with extensive training, and require total supervision and care.5

    • ↵ii Brody23 makes a further objection to “best interests”—that it yields the wrong answer in children who are profoundly disabled (p 38). This paper can be seen as providing a reply to this objection, by emphasising the effect of severe intellectual disability on the benefits of life.

    • ↵iii Tooley uses the language of “rights” rather than interests.

    • ↵iv This argument has obvious similarities to Don Marquis’s argument on the wrongness of killing fetuses.34

    • ↵v This intuition is perhaps a reason to reject purely objective models of value.

    • ↵vi This has the apparent object of avoiding making a controversial judgement—that is, that a patient is “better off dead”. Fenwick18 goes further in suggesting that at times best interests are also appealed to in an attempt to avoid making explicit “quality of life” judgements.

    • ↵vii I am grateful to a reviewer for highlighting this point.

    • ↵viii Boddington and Podpadec51 criticism is aimed at philosophers, but it applies equally to doctors.

    • ↵ix For similar suggestions, see Arras38 (p 32). A related claim is that life without the capacity for certain goods is “meaningless”.55ixIt is thus a form of discrimination (in the uncontroversial sense)—but not “unjust” to do so.

    • Competing Interests: None.

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