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Friday, October 31, 2014

Brittany Maynard: Assisted Suicide is Not a Personal Act

 I am opposed to assisted suicide legislation.  In the last month end of life in the form of assisted suicide has been at the forefront of my mind thanks to Tim Bowers and Brittany Maynard. Maynard's story has gone viral and millions of people have seen her video created with the assistance of Compassion and Choices. Bowers was briefly in the news a year ago. Bowers was an avid hunter who fell from a tree stand and experienced a severe spinal cord injury. He died within 24 hours of the injury. What makes Bowers death unusual was that his family requested heavy sedation be lifted so he could decide if he wanted to live or die. Bowers chose to die.

Any nuanced effort to analyze why Bowers died immediately after a spinal cord injury is perceived to be in bad taste if not cruel. Any criticism of Maynard’s highly public end of life replete with two tear jerking videos is also thought to be cruel. How can one criticize Maynard and others who are terminally ill? Criticism is needed. Without criticism and serious discussion end of life issues will remain obscured. This criticism is not about Maynard or Bowers directly. I do not in any way criticize the Maynard or Bowers families. Maynard can legally die in Oregon via the Death with Dignity Act: that is her legal right. Bowers family had the legal right to ask Tim Bowers if he wanted to die. Both the Maynard and Bowers families did what they thought was right. Again, I do not question this. Maynard and Bowers were loved by their families. I accept this as a given and they have my deepest sympathies.

Like a few others, I take exception to the slick Compassion and Choices PR campaign.  I decry the romantic vision of death and extreme emotional hype the media has used to generate news ratings.  I despise the lack of reason involved. I am deeply disturbed that neither Bowers nor Maynard has generated the sort of serious discussion that desperately needs to take place.  I question why did Bowers die? Why was autonomy so narrowly perceived?  Why was life post spinal cord injury  believed to be a fate worse than death?  These are questions, social problems, that need to be addressed. It is not an exaggeration to note lives are at stake. Bowers did not want to live in a nursing home.  What young married man would want that? None. This is the leap of logic no one took—why do people with an injury as severe as what Bowers experienced live in a nursing home? Why do the vast majority of people with a disability remain unemployed? Why is poverty and disability commonplace? I can only conclude the ADA, and the last 40 years of progressive legislation designed to empower people with a  disability, has been a legislative success and social failure.  Simply put, laws that were supposed to make people with a disability equal have not resonated culturally.

Maynard’s end of life options, like the choices Bowers encountered, are not good.  End of life, especially assisted suicide, is perpetually in the news.  What makes Maynard different is the extreme emotional manipulation. Rather than asking how can we empower people with a terminal illness to get the most out of life via outstanding palliative and hospice care we frame the discussion around the right to die. Dying is not a right. Dying is a biological inevitability. No one dies in a social vacuum.  The extreme emotional framing effectively negates any real discussion of the social implications of assisted suicide as practiced in Washington and Oregon.  Even the slightest dissent is met with a backlash. For example, Ira Byock suggested Maynard could have the peaceful death she desires via palliative and hospice care. He suggested she need not take a lethal medication. I thought Byock was deferential but Maynard lashed out and stated she was concerned  that Dr. Ira Byock will speak on my behalf and that as a terminally ill patient I find it disrespectful and disturbing when people discuss my personal health with details that are not accurate to push an agenda”. Byock did not speak on Maynard’s behalf but rather suggested other viable options existed. The person with an agenda is not Byock but rather Maynard. This is not a critique but a matter of fact observation.  In this regard I am no different from Maynard—we share oppositional agendas. We are both acting as advocates. We both have the right to state our opinions. 

Lost in emotional rhetoric are the social, political, and health care ramifications of assisted suicide legislation. Kevin Yuill, in Assisted Suicide, wrote:

The right to die sought by proponents of legalization of assisted suicide is not a right or freedom at all. It is a heavily regulated process that will undoubtedly become more and more regulated with so many safeguards that those who suffer at the end of life will be worse off… The death bed scene will have to be regulated if it is to be transparent. The actions of relatives and doctors alike may have to be monitored. The time-honoured tradition whereby doctors occasionally bring relief to suffering patients in their last few hours or days will be brought under official control… Once bureaucratized, there will be no space for compassionate deeds… Thus, ironically legalizing assisted suicide may well be worse for the dying.  Whereas we might impute the noblest reasons to those campaigning for a change in the law, the devil is in the details.

Byock is correct in stating “physician assisted suicide is not a personal act. It is a social act”. If this social act becomes as bureaucratized as Yuill suggests no person near death will benefit from assisted suicide legislation. This is exactly the sort of discussion we have failed to engage in. Reason is replaced by emotion—Maynard is an extreme example of this.  No one is questioning her personal health care choices.  To do so would be wrong.  As Yuill noted the devil is in the details. I want to those details to be subject to intense discussion.   

Sunday, October 26, 2014

I Did Not Say it But I Did Think it.

I like to read various feminist websites. The range of views expressed is remarkable as are the topics of discussion. One website I often read is XO Jane. Two days ago XO Jane had the nerve to publish "Do We Care About Brittany Maynard's Right to Die Because She's Hot" by Beejoli Shah. Link: Here are a few juicy quotes:

Regardless of where you stand on assisted suicide, an issue as controversial as this deserves careful thought before being opined on, and one thing becomes glaringly obvious the more I read her story: We care about Brittany Maynard because Brittany Maynard is beautiful.

Look around at every news story recapping Maynard's journey. despite the copious amounts of video blogs and news interviews she's sat for recently--ones where you can see the toll terminal brain cancer has taken on her body, including slowness of movement and cancer related weight gain--many outlets choose to use old photos of Maynard, ones where she is laughing at her wedding or curled up with her husband on vacation, rather than ones that reflect how she looks now. In particular, People raised eyebrows among celeb weekly editorial newsrooms when they ran an air brushed and photoshopped picture of Maynard on their cover last week.

Shah reviews well know figures in assisted suicide and that came to public attention. Louise Schaefer, Peggy Battin, Barbara Mancini and more distantly in terms of time Jack Kevorkian. What makes Maynard different in Shah's opinion is "her narrative is better because she photographs better." 

Harsh words by Shah and I will merely point out that sometimes the truth hurts. I think Shah is spot on here. I have no interest in hurting Maynard. She has my sympathy as does her family. I wish them all the best at this difficult time. My point is that the sensationalism associated with her narrative is an indictment of American culture. Sensationalism has replaced a sober and serious discussion about how Americans will die.  Sensationalism generates ratings and sells news papers and magazines. What sensationalism does not do is help any human being, including Maynard, when they need to think about end of life choices.