Reading the case McKay v. Bergstedt reminded me of the movie The Diving Bell and the Butterfly, or Le Scaphandre et le papillon. It is the heartwrenching true story of French Elle editor-in-chief Jean-Dominique Bauby who, in 1995 at the age of 43, suffered a stroke from a cerebro-vascular accident that left him in a state of total paralysis, incapable of any verbal communication, in what is known in the medical community as "locked-in syndrome." Only his left eye wasn't paralyzed. His mental faculties totally intact as he lay motionless in his hospital bed, Bauby learned to communicate with the outside world using his left eyelid, the only part of his body over which he still had any control. During the next fourteen months, using a communication code developed by his therapist and his publisher's assistant, who transcribed this code, Bauby was able to compose, letter by letter, a memoir of his life struggle eloquently describing the aspects of his interior world, including the psychological torment of being trapped inside his body. Bauby died in 1997, two days after its publication. The movie, which is based off of Bauby's autobiography, was nominated for 4 Oscars, and won the Golden Globe for Best Foreign Language Picture and Best Director.
Immediately after watching this movie, all I could think about was the rights of mentally-competent quadriplegics. Throughout the movie, you grow to understand and feel Jean-Do's frustration, anger, and sadness as he lays in bed, unable to tell the nurse when he did and did not want to watch tv, unable to tell his children he loved them, constantly remembering his old life. He wanted to die. He repeatedly gave this sentiment, but everyone around him refused to let him give up his life. He eventually spent his days recounting his life story, but many people in his situation do not have this opportunity. It made me weigh the balance between desperately wanting to die because life has nothing more to offer, and using your days to be productive in whatever capacity you can. The world is a better place because of Bauby's memoir. The Diving Bell and the Butterfly is truly a piece of art. I believe a person has the right to choose when he or she can die, especially in such a solemn situation. However, general society usually begs to differ. It makes me wonder if the quadriplegic community should enlist help from the medical and legal communities to establish their rights in a formal manner.
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http://seattletimes.nwsource.com/html/localnews/2008352565_apwaassistedsuicide2ndldwritethru.html?syndication=rss
Washington passed an initiative during yesterday's election which would allow doctors to prescribe lethal medication to terminally ill patients. This year's proposal differs from the earlier Washington measure - it doesn't allow doctors to administer lethal drugs on behalf of patients who can't do so themselves.
Any patient requesting the fatal medication must be at least 18, declared competent and a resident of Washington state.
The patient would have to make two oral requests, 15 days apart, and submit a written request witnessed by two people, including one person who is not a relative, heir, attending doctor, or connected with a health facility where the requester lives.
Two doctors also would have to certify that the patient has a terminal condition and six months or less to live.
I suppose this is a step in the right direction (if you beleive people have a right to make end of life decisions) but it looks like the initiative has no teeth as it precludes quadriplegics (because doctors arent't allowed to actually administer the drugs) and anyone whose disease is not terminal.
Erin
Bauby's story reminds me of Christopher Reeves, who I always found to be a remarkable man. To suffer such an immense tragedy that takes away one's entire mobility, and to turn that into something inspirational for millions of people, both disabled and non-disabled, is nothing short of a miracle. When many in that situation would have just given up on life, Bauby and Reeves turned their "handicaps" into sources of motivation for all of their fans. Both of these men should be commended as heroes for their courage and persistence in light of such adversity.
In last year's season premiere of Showtime's This American Life (an offshoot of NPR's radio program),the show tackled the struggles of a 27-year-old quadriplegic named Mike Phillips. Mike is unable to speak or move his limbs as a result of spinal muscular atrophy. As with Bauby, Mike attempts to escape the confines of his situation through communicating his struggle.
Mike generally communicates via a voice simulator connected to his laptop. At the end of the episode, however, Mike's uplifting take on his personal experience is read by Johnny Depp (Mike's choice).
Mike himself notes how wonderful it has been to see technology advance almost at the same pace as his debilitation. Ultimately, you feel that Mike is thankful for what he has.
Consequently, the episode maintains a refreshingly hopeful tone as it depicts Mike as an ambitious young man still able to go to the movies and even date. In fact, the episode documents Mike's relationship with his girlfriend, Sara.
Still, the episode doesn't shy away from the almost incomprehensibly frustrating daily struggles that Mike faces. In addition, a subtext of the episode are the incredible sacrifices made by his live-in mother in order to give Mike the best possible life.
After watching the program I ended up considering the situations of the thousands with similar conditions but without the same support; those individuals like Bauby, unable to communicate with others.
Although the program highlighted Mike's many reasons to live, I am begrudgingly left agreeing with the poster of this blog in feeling that the Right to Die must be given more consideration.
I also watched this movie, and I found it to be incredibly sad but also hopeful. Yes, Bauby expressed his wishes to die on numerous occasions, but it seemed (or at least the way the movie depicted it) that there still existed the proverbial light at the end of the tunnel. Hence the title- The Diving Bell and the Butterfly. He alternates between feelings of utter desolation and feelings, albeit brief, of happiness. His state causes him to feel weighted down like a diving bell but at certain rare moments, his imagination allows him to feel like a butterfly when it transports him and allows him to escape for his misery. I'm not sure where I stand on this right to die issue. In a democratic society it seems legitimate for one to exercise that right, but I also feel that in that state one could vacillate between wanting to die/staying alive. The decision to die isn't always set in stone. I guess I'm just an idealist in that I feel there is still some significance in the fact that despite being "locked in," he's still alive. But of course, I also don't think we have the right to impede on one's right to die either.
Ellie
I had the honor to spend 30 minutes with Christopher Reeve. I also have seen Diving Bell and Mar Adentro. Let each person, and hopefully with the support of their family, decide.
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