I’m Not Dead! Ethical Challenges at the End Of Life

In 1861, a few early 17th Century houses collapsed on High Street, Edinburgh Scotland.  Many occupants lost their lives and as rescue workers considered taking a break from clearing the debris a voice was heard from the rubble:  “Heave awa’ chaps, I’m not dead yet!

Imagine lying on a bed in the middle of the border between two states.  And imagine the border separates you into two halves, the left half in one state and the right in another.  If this happened, theoretically, the left side of your body could be declared legally dead while your right side was legally alive!

The story of the survivor in Scotland and the example above illustrate how the concept of death remains controversial and ethically complex.

Is Declaring Death an Issue?

No and Yes!

In 1968 an ad-hoc Harvard Committee proposed to include death by neurological criteria (in addition to death by cardiac death, DCD) as a basis for diagnosing death.  In 1981, the government adopted the proposal under the Uniform Determination of Death Act (UDDA).  It defined the declaration of death by neurological criteria as the total and irreversible cessation of all functions of the whole brain.  The whole brain includes the outer layers of the brain which controls consciousness and the brain stem which controls vegetative functions such as breathing.

But there’s a catch!

Though all fifty states have adopted both criteria, there is one state where a family can refuse brain death declaration on religious grounds —New Jersey.  Although New York, California, and Illinois have “reasonable accommodations” permitted for brain dead patients, only New Jersey has a complete exemption.  According to the New Jersey statute, if the physician has reason to believe, “…that such a declaration [death by neurological criteria] would violate the personal religious beliefs of the individual…” then the declaration of death can be based solely on DCD.  In other words, a family can refuse declaration of death by neurological criteria.

What Was Wrong With The Old Way?

Nothing, until advanced technologies made things more complex.

Traditionally, death by cardiac death (DCD)/Cardio-Respiratory Criteria was the only way to determine if someone expired.  After a certain allotted time, a physician, or specified health professional, declares someone clinically dead when they cease to perfuse and ventilate, i.e., their heart stops beating, and they stop breathing.  This image is depicted commonly on television shows when the monitor reveals a flat line.  Medically, the term is asystole.  However, mechanical ventilation and other medical advances can replace failed organs leaving some patients in a seemingly perpetual, unconscious state.  This condition forced many to question what constituted life.

Why Is This An Issue?

Because the line between helping and hurting patients is more blurred.

Case in Point

In 2013, 13-year-old Jahi McMath suffered an anoxic brain injury following tonsillectomy and adenoidectomy.   After thorough diagnostic testing, physicians declared her dead by neurological criteria.  But the family refused to accept this declaration.  Unfortunately for them, they lived in California and could not legally refuse a clinical diagnosis of death.  As a result, the family transferred Jahi to a facility in New Jersey and legally exempted Jahi from a declaration of death by neurological criteria because it apparently violated their religious beliefs.

What a devastation to lose such a young child!  My heart goes out to Jahi’s family, and I understand their rationale.  Who wouldn’t want to do everything possible to save the life of their daughter?  But it raises ethical questions.  Are we helping or ultimately hurting Jahi?  Moreover, are we helping or hurting her family?  We’ve developed the technology to sustain organs that cease to function but to what end?  

As of this post, Jahi’s heart continues to beat while she receives artificial nutrition and ventilation.  Recent diagnostic testing suggests that Jahi’s whole brain may not be completely destroyed.  If this is true, Jahi would no longer be placed under the category of being dead by neurological criteria.  But Jahi’s brain remains severely and irreparably damaged.

In a recent interview, Jahi’s mother admitted, “I thought she [Jahi] would get a feeding tube and trach 1 and she would get up.” 2   This quote implies a breakdown in communication.   Either the severity of Jahi’s condition was not clearly communicated or not adequately understood, or both.  Either way, Jahi’s mother came away with false hope.

Bottom Line:  No person has ever recovered after being declared dead by neurological criteria.

Finally, this case highlights the problems associated with varying state laws.  Theoretically, you can be dead in New Jersey but not New York.  As a society, we may be technologically advanced and able to sustain organs, and even “life”, but are we harming patients and family in the interim?  Are we preventing them the opportunity to grieve?  Time will tell.

Do you want to learn more about ethical decisions that affect healthcare?  Visit Grapevine Academy to see workshops I have on this topic.


“trach” – short for tracheostomy which is an artificial airway in the throat used to facilitate long-term mechanical ventilation.

 2 Rachel Aviv, “What Does It Mean To Die?  New Yorker, 02/05/18.

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