Monday, July 22, 2013

The Right To Die. Maybe. Sometimes. If You Don't Change Your Mind. Today.

Great article in the New York Times Magazine, called A Life-or-Death Decision, by Robin Maranz Henig, about an ethicist Peggy Battin, who teaches and writes on the right to self-determination and end of life decisions.  Her husband, also a college professor, suffered a severe head injury while bike riding, leaving him a wheel-chair bound, machine dependent quadriplegic, a year after he'd written a living will forbidding the use of "measures to unnaturally prolong or postpone the dying process."  In the years since the accident in 2008, her husband, Brooke Hopkins, has required around the clock care to maintain his breathing, a feeding tube, and an enormously expensive motorized wheelchair for mobility, and a quarter of a million dollars a year spent on 12 aides who help him around the clock.  He's been in and out of the hospital, and what's striking is that from the time Dr. Hopkins wrote his advance directive, he changed his mind.  Now the couple struggle with the dynamic that sometimes he says he wants to die, his wife ignores his requests because she believes he doesn't really mean it, and generally he later says that in fact, he's glad measures were taken that kept him alive.  Dr. Brooke is able to read with a voice-commanded computer screen and co-teaches a courses in his home.

I'm all in favor of advance directives and the right to die with dignity in a situation where healthcare prolongs the inevitable death.    This story, however, was extremely confusing.  One member of the couple is a bioethicist whose career has revolved around these issues.  The other is a gentleman with a head injury, an impaired lifestyle requiring extreme measures of support, a general (or so portrayed) happy and positive outlook who is still culling meaning from life and contributing to society, and yet, there is no absolute way he can say "enough" ( he tried in a Final Letter) because any such statements are felt to be transient, reflective of a momentary state of distress that will pass, and so in a Catch-22, it's not quite clear that he can ever practice what his wife teaches.

I will mention that the article had a single passing reference to the fact that Dr. Hopkins (Ph.D. from Harvard, athlete, risk taker, life of the party, and esteemed college professor) suffered from bipolar disorder, and aside from that single mention, it was never part of the discussion as to why he shouldn't call the shots on his life, have an advance directive, or called into question as a reason why he might be changing his mind about wanting to live or to die. Bipolar disorder got a mention, but it does not sound to be what defines Dr. Hopkins.

So what do you think?  How do we ever really know for sure what someone wants if they change their mind or waiver during moments of crisis?