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Chapter 10 - Silenced

Published online by Cambridge University Press:  22 December 2025

Denise M. Dudzinski
Affiliation:
University of Washington School of Medicine, Seattle
Kaarkuzhali Babu Krishnamurthy
Affiliation:
Boston Medical Center-Brighton
Paul J. Ford
Affiliation:
The Cleveland Clinic Foundation, Cleveland
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Summary

When a patient is developmentally and intellectually disabled, nonverbal, never competent, without a legal guardian; who speaks for him when urgent medical care is needed? In this case, a twenty-five-year-old patient with a mental age of two presented with a history of frequent bowel obstructions and constant abdominal pain with feeding. Upon admission, he was physically restrained and sedated to enable the treatment team to provide tube feeding. The treating physician requested an ethics consult, asking whether artificially nutrition should be continued, and who should make this decision? His biological parents relinquished him at birth. A foster family provided care for twenty-five years but could no longer manage his care. The state caseworker could not make medical decisions. The patient did not have a legal guardian, and urgent medical decisions needed to be made. The Ethics Committee along with many key stakeholders, gathered to discern this morally complex case. After much discussion, a recommendation was made to discontinue artificial nutrition and provide comfort care. This recommendation was grounded in a best interest standard. The treatment team agreed with the recommendation. Following consultation with the biological and foster families, feeding was discontinued, and the patient died.

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