The Relational Potential Standard: Rethinking the Ethical Justification for Life-Sustaining Treatment for Children with Profound Cognitive Disabilities
Aaron Wightman
Search for more papers by this authorJennifer Kett
Search for more papers by this authorGeorgina Campelia
Search for more papers by this authorBenjamin S. Wilfond
Search for more papers by this authorAaron Wightman
Search for more papers by this authorJennifer Kett
Search for more papers by this authorGeorgina Campelia
Search for more papers by this authorBenjamin S. Wilfond
Search for more papers by this authorAbstract
In this era of rapidly advancing biomedical technologies, it is not unusual for parents of children with profound cognitive disabilities to ask clinicians to provide invasive life-sustaining treatments. Parental requests for such interventions pose a moral dilemma to the treating medical team, as there may be a discrepancy between the team's perception of the child's best interest and the apparent rationale underlying a parent's request. This gap highlights the limitation of the best interest standard in cases where, due to a neurodevelopmental disorder or brain injury, the child's capabilities are severely limited and their interests may be difficult to discern. The harm principle is also inadequate for decision-making in response to these parental requests. To address these limitations, and inspired in part by John Arras's work on the relational potential standard, we propose an integration of care ethics within pediatric decision-making using a new version of this standard. The potential for children to be in caring and loving relationships with their parents, what we will call “relational potential,” may provide an ethical justification for clinicians to support parental requests for life-sustaining treatments.
Notes
- 1Here and throughout, we employ the term “ disability” instead of “impairment,” following the definition from the American Association on Intellectual and Developmental Disabilities (see http://aaidd.org/intellectual-disability/definition). We acknowledge the difficulty in finding the best language to underscore how disabilities are constituted at the intersections between the social and the biological. We use “disability” to incorporate the ways in which social norms and social structures cause disability and shape our normative understanding of it.
- 2J. D. Lantos, “Trisomy 13 and 18—Treatment Decisions in a Stable Gray Zone,” Journal of the American Medical Association 316 (2016): 396–98; M. P. McGraw and J. M. Perlman, “Attitudes of Neonatologists toward Delivery Room Management of Confirmed Trisomy 18: Potential Factors Influencing a Changing Dynamic,” Pediatrics 121 (2008): 1106–10; A. Wightman, J. C. Kett, and B. S. Wilfond, “Responding to Parental Requests for Life-Sustaining Treatment—Relational Potential Revisited,” Acta Paediatrica 107 (2018): 923–26.
- 3J. D. Arras, “Toward an Ethic of Ambiguity,” Hastings Center Report 14, no. 2 (1984): 25–33. While our focus is on Arras's relational potential standard, we recognize that an earlier version of “relational potential” was proposed by the theologian Richard McCormick. McCormick argued that biological life is not valued only for its own sake but also for its role as foundation to other “higher” values, in particular, those of human relationships and relation to the transcendent through relation to one's neighbor. In McCormick's judgment, if the potential to form relationships with others is absent or is subordinated to the mere effort for survival, a negative quality of life exists (R. A. McCormick, “The Quality of Life, the Sanctity of Life,” Hastings Center Report 8, no. 1 [1978]: 30–36). Although Arras rejects McCormick's standard, arguing that its application conflated the best interest standard with the potential for distinctly human capacities, both standards are based on the recognition of the value of human relationships.
- 4J. A. Robertson, “Involuntary Euthanasia of Defective Newborns: A Legal Analysis,” Stanford Law Review 27, no. 2 (1975): 213–69; A. E Buchanan and D. W. Brock, Deciding for Others: The Ethics of Surrogate Decision Making (Cambridge: Cambridge University Press, 1989), xv, 422.
- 5 Arras, “ Towards an Ethic”; Robertson, “Involuntary Euthanasia.”
- 6J. D. Arras, “Ethical Principles for the Care of Imperiled Newborns: Toward an Ethic of Ambiguity,” in Which Babies Shall Live? Humanistic Dimensions of the Care of Imperiled Newborns, ed. T. H. Murray and A. L. Caplan (Clifton, NJ: Humana Press, 1985), 120.
- 7J. L. Nelson, “Taking Families Seriously,” Hastings Center Report 22, no. 4 (1992): 6–12.
- 8L. M. Kopelman, “Rejecting the Baby Doe Rules and Defending a ‘Negative’ Analysis of the Best Interests Standard,” Journal of Medicine and Philosophy 30, no. 4 (2005): 331–52; E. K. Salter, “Deciding for a Child: A Comprehensive Analysis of the Best Interest Standard,” Theoretical Medicine and Bioethics 33, no. 3 (2012): 179–97; L. M. Kopelman, “Using the Best Interests Standard to Generate Actual Duties,” AJOB Primary Research 4, no. 2 (2013): 11–14.
- 9Kopelman, “ Rejecting the Baby,” 346; Salter, “Deciding for a Child.”
- 10Kopelman, “ Rejecting the Baby,” 346.
- 11 Ibid.
- 12Robertson, “ Involuntary Euthanasia”; Kopelman, “Rejecting the Baby,” 346; Salter, “Deciding for a Child.”
- 13Robertson, “ Involuntary Euthanasia,” 255.
- 14D. S. Diekema, “Parental Refusals of Medical Treatment: The Harm Principle as Threshold for State Intervention,” Theoretical Medicine and Bioethics 25, no. 4 (2004): 246–63.
- 15B. S. Wilfond, “Tracheostomies and Assisted Ventilation in Children with Profound Disabilities: Navigating Family and Professional Values,” Pediatrics 133, supplement 1 (2014): 44–49.
- 16Arras, “ Towards an Ethic”; Arras, “Ethical Principles,” 223.
- 17Arras, “ Towards an Ethic.”
- 18 Ibid.
- 19 Ibid, 31.
- 20Lantos, “Trisomy 13”; McGraw and Perlman, “Attitudes of Neonatologists”; E. K. Salter, “Reimagining Childhood: Responding to the Challenge Presented by Severe Developmental Disability,” HEC Forum: An Interdisciplinary Journal on Hospitals’ Ethical and Legal Issues 29, no. 3 (2017): 241–56; D. Wilkinson et al., “Alfie Evans and Charlie Gard—Should the Law Change?,” BMJ 351 (2018): doi: 10.1136/bmj.k1891.
- 21V. Held, The Ethics of Care: Personal, Political, and Global (Oxford: Oxford University Press, 2006), 9–13.
- 22V. Held, “Feminist Transformations of Moral Theory,” in Ethics: History, Theory, and Contemporary Issues, ed. S. M. Cahn and P. J. Markie (New York: Oxford University Press, 2009), 724–39, at 730.
- 23C. C. Gould, Rethinking Democracy: Freedom and Social Cooperation, in Politics, Economy, and Society (Cambridge: Cambridge University Press, 1988), x, 363.
- 24J. W. Walters, What Is a Person? An Ethical Exploration (Urbana, IN: University of Illinois Press, 1997), 70–72.
- 25E. F. Kittay, Love's Labor: Essays on Women, Equality, and Dependency (New York: Routledge, 1999), 150.
- 26E. F. Kittay, “ The Personal Is Philosophical Is Political: A Philosopher and Mother of a Cognitively Disabled Person Sends Notes from the Battlefield,” in Cognitive Disability and Its Challenge to Moral Philosophy, Metaphilosophy Series in Philosophy, ed E. F. Kittay and L. Carlson (Chichester, England: Wiley-Blackwell, 2010), 393–413, at 408.
- 27 Ibid., 410.
- 28T. K. Koogler, B. S. Wilfond, and L. F. Ross, “Lethal Language, Lethal Decisions,” Hastings Center Report 33, no. 2 (2003): 37–41.
- 29A. Janvier, B. Farlow, and B. S. Wilfond, “The Experience of Families with Children with Trisomy 13 and 18 in Social Networks,” Pediatrics 130, no. 2 (2012): 293–98.
- 30Ibid.; J. Guon et al., “Our Children Are Not a Diagnosis: The Experience of Parents Who Continue Their Pregnancy after a Prenatal Diagnosis of Trisomy 13 or 18,” American Journal of Medical Genetics 164, no. 2 (2014): 308–18, at 311.
- 31P. C. Mann, D. E. Woodrum, and B. S. Wilfond, “Fuzzy Images: Ethical Implications of Using Routine Neuroimaging in Premature Neonates to Predict Neurologic Outcomes,” Journal of Pediatrics 163, no. 2 (2013): 587–92.
- 32E. F Kittay, “At the Margins of Moral Personhood,” Ethics 116, no. 1 (2005): 100–131.
- 33Robertson, “Involuntary Euthanasia”; E. F. Kittay, “At the Margins of Moral Personhood,” Bioethical Inquiry 5, no. 2–3 (2008): 137–56.
- 34Salter, “ Reimagining Childhood.”
- 35B. S. Carter, “Should We Always Honour Parental Requests?,” Acta Paediatrica 107, no. 6 (2018): 916–18.
- 36L. F. Ross, Children, Families, and Health Care Decision Making (Oxford: Clarendon Press, 1998).
- 37Held, The Ethics of Care; Carter, “Should We Always Honour Parental Requests?”
- 38Carter, “Should We Always Honour Parental Requests?”; R. Macklin, “Dignity Is a Useless Concept,” BMJ 327, no. 7429 (2003): 1419–20.
- 39Gould, “ Rethinking Democracy,” 363; Kittay, “The Personal Is Philosophical.”
- 40Kittay, “ The Personal Is Philosophical,” 400.
- 41Mann, Woodrum, and Wilfond, “Fuzzy Images,” 587–92; D. A. Shewmon, “The Case of Jahi McMath: A Neurologist's View,” Defining Death: Organ Transplantation and the Fifty-Year Legacy of the Harvard Report on Brain Death, special report, Hastings Center Report 48, no. 6 (2018): S74–S76; N. L Childs and W. N. Mercer, “Misdiagnosing the Persistent Vegetative State: Misdiagnosis Certainly Occurs,” BMJ 313 (1996): doi:10.1136/bmj.313.7062.944; N. L Childs, W. N. Mercer, and H. W. Childs, “Accuracy of Diagnosis of Persistent Vegetative State,” Neurology 43, no. 8 (1993): 1465–67; C. Schnakers et al., “Diagnostic Accuracy of the Vegetative and Minimally Conscious State: Clinical Consensus versus Standardized Neurobehavioral Assessment,” BMC Neurology 9 (2009): 35.
10.1136/bmj.313.7062.944 Google Scholar
- 42N. G. Levinsky et al., “Influence of Age on Medicare Expenditures and Medical Care in the Last Year of Life,” Journal of the American Medical Association 286, no. 11 (2001): 1345–55.
- 43McGraw and Perlman, “ Attitudes of Neonatologists.”
- 44 Ibid.