Erin Paquette, MD, JD, M. Bioethics
Assistant Professor of Critical Care Pediatrics and School of Law
Ann and Robert H Lurie Childrens Hospital of Chicago
Chicago, Illinois
Disclosure information not submitted.
Victor Pinto
Medical Student
Northwestern University Feinberg School of Medicine, United States
Disclosure information not submitted.
Valerie Alvarez Renteria
Undergraduate
Loyola University Chicago, United States
Disclosure information not submitted.
Joel Frader, MD
Professor of Pediatrics
Northwestern University Feinberg School of Medicine, United States
Disclosure information not submitted.
Title: Legal Cases Challenging Death by Neurologic Criteria (DNC) Add Insight into Family Perspectives
Introduction: With calls to revise the Uniform Determination of Death Act (UDDA), it is critical to understand stakeholder perspectives on determination of DNC. Family perspectives are difficult to ascertain. Existing literature demonstrates several areas of confusion. We hypothesized that legal cases challenging DNC provide useful insight into family perspectives in areas of high conflict.
Methods: We reviewed cases challenging determination of death by DNC. Court documents were coded and reviewed to reach consensus between two raters. We employed thematic content analysis to identify themes reflecting family perspectives.
Results: 31 cases were identified. Religious objections were common, “[He] is still a human person, alive with a full body, soul and spirit given by God.” Discordance between appearance of the body and the concept of death were noted, “[He] still has a heartbeat, pulse, and many of his vital organs are still functioning.” Rights to make decisions about end of life through surrogates, “[The patient] has a legitimate interest in continuing to live and his mother has a fundamental right to make decisions concerning the care…of her children,” and advance directives, “[The patient’s] wish to be provided nutrition, hydration, ‘life support’…is clearly specified in her Advance Written Directive,” emerged. Families doubted the motivation to declare DNC, seeing it as a coercive alternative to family’s declining requests to withdraw life sustaining treatment, “[The hospital] repeatedly sought consent to terminate life support,” and raising insurance concerns, “[The hospital] provided incentives for physicians to reduce the cost of medical care, which encouraged defendants to consider…that [the patient] did not have [insurance].” Finally, families did not fully understand the relationship between the exam and declaration of DNC, “[A]t the meeting…he communicated…that [patient] is “brain dead” and has been pronounced dead…Although [doctors] told [family] they believed [patient] was “brain dead” this was the first time anyone told [family] that [patient] was formally pronounced dead.”
Conclusions: Legal challenges to DNC are an important source of information about how families experience conflict in DNC. Leveraging all sources to understand the family perspective will be key in considering a revised UDDA.