Many years ago Nancy, the wife of a colleague, suffered a massive aneurysm.  The result was nearly full paralysis.  Nancy’s eyes and one hand with its fingers retained movement.  She was mentally alert, but unable to speak.  It took some time after the aneurysm to judge the extent of damage and the chances of future improvement.  It quickly became clear that Nancy could answer yes-or-no questions, and eventually a technologically enhanced form of communication was established for her which allowed more complex communication.

Nancy’s husband said that she had always been very clear about her wishes in such a situation:  she did not want to be kept alive with extraordinary therapy and care or with invasive medical interventions, and if the situation were irreversible she did not want the artificial prolongation of a very poor quality of life.  After the aneurysm, obviously, such matters became very concrete and pressing.  In Nancy’s impaired state, swallowing was difficult, and her air passages could become obstructed and require clearing.  Sometimes intubation was necessary.  After choking occurred once, with intervention given by nursing home staff in the absence of positive direction, an authoritative directive was sought.  Because Nancy could understand the situation and could communicate her wishes, her husband and caregivers were able to ask her directly her preferences in her new situation.  Did she want future intervention to restore her breathing?  Her answer was quite clear and was repeated with the repetition of the question:  YES.  When faced with the life-and-death choice, Nancy in her physically impaired state made a choice opposite to what she had always given others to understand would be her choice.

What changed Nancy’s mind?  Two possibilities come to mind.  First, it is possible that having undergone breathing obstruction once, Nancy knew it was a grim experience and decided against it as a way to die, while retaining a general wish to avoid extraordinary medical interventions.  Secondly, however, it is possible that after spending some time as a severely handicapped person, Nancy found that life limited in ways she once would have deplored was in fact still life worth living.  Nancy was able to communicate, the classical music that she loved was readily available and surrounded her much of the time, her husband visited two or three times day, other friends stopped by, she could be taken outside in a wheelchair and later was able to go to Mass.  More generally, Nancy was able to give and to receive love.

If the second possibility is correct, it might be understood better with an illustration.  A healthy, daredevil 18 year old who cannot imagine growing old might well consider the life of a frail 85 year old to be hopelessly limited and undesirable.  The 85 year old, however, whatever his or her aches and pains, might well be full of joys and pleasures, some beyond the imagining of an 18 year old.  So too, Nancy may have come to appreciate how much good was present even in her greatly circumscribed world, and that appreciation might well have developed after her aneurysm.

Now Nancy’s example does not settle all questions.  No doubt many people who have suffered grave handicaps would make different choices.  And the particular issue before Nancy did not concern the determination of the moment of death, but rather concerned whether or not to intervene to prolong living.  The point of telling this story here is simply this:  lax criteria for determining death may well become determinative because people imagine themselves in situations similar to Nancy’s and make assumptions about their wishes in such situations.  Those assumptions, however, in fact may well be much more problematic and questionable than first appears.

Consider also a series of cases reported in 1999 by the television news magazine, 60 Minutes.  The show earlier (late 1998) had a major segment on Jack Kevorkian, a retired medical doctor who gained notoriety by helping ‘terminally ill’ people kill themselves.  The segment on Kevorkian itself presented several cases, and included video of one case in which Kevorkian ‘assisted’ a suicide.  Kevorkian and his supporters presented his work as ending intolerable suffering.  Negative reaction to the segment was strong.  Many handicapped people objected vehemently and sought to have their stories also told.  Those stories included people born with or acquiring illnesses or injuries that severely limited their mobility, life expectancy, or scope of activity.  The people in question, nevertheless, argued that what they needed was not someone to help kill them, but for everyone to appreciate them for their achievements and to assist them in accommodating their needs and fulfilling their potential.

These counter-Kevorkian stories included a person who was almost entirely ‘locked-in’:  almost entirely paralyzed and only eventually enabled to communicate with technologically-enhanced means.  The story was much like Nancy’s:  life, which in former days would have seemed disastrously and unacceptably circumscribed, now seemed very much worth continuing.  Another story was that of a man with whom I grew up named Steve Mikita.

Steve was born with spinal muscular atrophy and his parents were told that he would not live to his second birthday.  He did live to be two and much older, with the encouragement of a loving and supportive family and great personal determination.  Steve in due course graduated from high school, then college, then law school.  He was admitted to the bar, he achieved professional success, he became assistant attorney general of Utah.  His childhood hero was Franklin Roosevelt, who showed that serious physical impairment need not prevent great personal achievement.  Steve never accepted the notion that his own life was not worth living and enjoying.  Of course, it was a life with difficulties:  but what life isn’t?

As with Nancy’s story, these 60 Minutes cases do not directly address the main issue in question in the moment of death debate.  But that debate is very much altered once the intrinsic value of life is firmly asserted and once casual devaluing of the lives of others because of handicap and difficulty is rejected.

Another case more directly involves the problem of determining the moment of death.  This case is much more recent than those of Nancy or the 60 Minutes segment.  The case is presented in the February 5, 2018, number of The New Yorker magazine and involves a girl named Jahi McMath.

Jahi suffered a heart attack following what should have been a routine tonsillectomy in 2013.  Her hospital in California determined that Jahi had died, and eventually five doctors for the state of California upheld that decision, asserting the ‘irreversible cessation of all functions of the entire brain, including the brain stem’.  The family declined to accept the hospital’s decision.  Before the hospital could reify unmistakably its determination of Jahi’s death – before they could definitely kill her – her family moved her to New Jersey, a state where brain death criteria for the determination of death can be rejected by law on religious grounds.

Jahi continued to live for five years until June 2018.  According to the California hospital and its criteria and California doctors, Jani was certainly and absolutely dead:  yet in New Jersey she began to menstruate, which does not typically happen amongst the dead.  The family, and impartial outsiders including doctors, observed Jahi’s ability to respond to assurances of love and to answer yes-or-no questions by squeezing her hand, and were convinced that the responses indicated awareness and emotion and were not merely automatic responses to sound or physical stimulation.

Until the late 1960s, death meant the cessation of cardio-pulmonary function.  With the advent of organ transplant surgery on a large scale, there was a new reason to make death easier to determine before the end of cardio-pulmonary function.  With many states adopting the brain death theory, a national change quietly occurred.  At this point it will be helpful to quote Rachel Aviv, the New Yorker author, at some length.  In

1981, the President’s Commission for the Study of Ethical Problems proposed a uniform definition and theory of death.  Its report, which was endorsed by the American Medical Association, stated that death is the moment when the body stops operating as an “integrated whole.”  Even if life continues in individual organs and cells, the person is no longer alive, because the functioning organs are merely a collection of artificially maintained subsystems that will inevitably disintegrate.  “The heart usually stops beating within two to ten days,” the report said.

The commission’s staff philosopher, Daniel Wikler, a professor at Harvard and the first staff ethicist for the World Health Organization, told me that he didn’t think the commission’s theory of death was supported by the scientific facts it cited.  “I thought it was demonstrably untrue, but so what?” he said.  “I didn’t see a downside at the time.”  Wikler told the commission that it would be more logical to say that death occurred when the cerebrum—the center for consciousness, thoughts, and feelings, the properties essential to having a personal identity—was destroyed.  His formulation would have rendered a much broader population of patients, including those who could breathe on their own, dead.

Despite Wikler’s reservations, he drafted the third chapter of the report, “Understanding the ‘Meaning’ of Death.”  “I was put in a tight spot, and I fudged,” he told me.  “I knew that there was an air of bad faith about it.  I made it seem like there are a lot of profound unknowns and went in the direction of fuzziness, so that no one could say, ‘Hey, your philosopher says this is nonsense.’  That’s what I thought, but you’d never know from what I wrote.”

‘Not supported’, ‘demonstrably untrue’, ‘fudged’, ‘bad faith’, ‘profound unknowns’, ‘in the direction of fuzziness’, and ‘nonsense’:  this from an author of the study on which the brain death theory relied for its national implementation.  And one notes that in Jahi’s case ‘two to ten days’ was in fact five years, and that the bodies of every person reading this ‘will inevitably disintegrate’.

And so the dead can menstruate and show affection, bad faith and nonsense stand behind national policy, and thousands who would have been considered very much not dead in 1960 are treated as a source for harvestable parts.

Some years ago I argued that the moment of death issue should properly be decided by taking the morally safer path. ([1])  When a clear duty is before us (such as Do not kill the innocent), we are obliged to follow the morally safer path and may not act on the basis of a doubtful argument.  Therefore, until it can be proven with moral certainty that death means brain death, rather than the cessation of cardio-pulmonary function, we are obliged to treat Jahi and those like her as living persons with an intact right to life which all others are obliged to defend and vindicate.  The brain death system rests on weak arguments and dubious assumptions and is, moreover, open to gross abuse by consequentialists desirous of its potential to cut medical costs and to increase the supply of transplantable organs.

[1] Mark Haverland, ‘The Moment of Death and the Morally Safer Path’.  In Beyond Brain Death:  The Case Against Brain Based Criteria for Human Death.  Michael Potts, Paul A. Byrne, and Richard G. Nilges, ed.  Dordrecht:  Kluwer Academic, 2000.

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