hypanis.ru September 2013 - Having Your VoiceHaving Your Voice


  An article in the New York Times Magazine by Robin Henig chronicles the struggle of married professors Peggy, a nationally recognized advocate for the “right to die” movement, and husband, Brooke, who had clearly decided and agreed that they wouldn’t want to live lives compromised by a serious illness or accident.   However, when Brooke  experienced a catastrophic bicycle injury that paralyzed him from neck down, he was determined to live even in severely reduced circumstances.  To date, he has been alive for four years at a cost of $250,000 year in round-the-clock nursing care.    

The article describes their everyday life and raises many interesting issues to consider in determining what you might want in a similar situation.  It is a cautionary tale that illuminates the confusion and complexity of planning for the end of life.  Among the thing you might want to consider are:


·       The power of the will to live that can be seen as an evolutionary force related to survival.

·       The ability humans have to adapt to compromises forced on us.

·       The fear of dying.

·       The bond between a loving couple that may influence the inability to let go or even to have a conversation about choosing to let go.

·       The issue of deciding to live and what it entails in terms of the drain on the family’s material and emotional resources.


The article is humbling in how it displays the glibness of planning for life’s end when we are healthy.  But when we are looking square in the face of dying…how will we respond?  Obviously, it can change.

 How would you respond in regards to these questions if you were faced with a similar situation?  Follow the comments that the Times provides at the link for further stimulation and reflection.  



The Bitter End: what doctors want is different from the general public when facing a health crisis.

On January 15th, 2013 “Radio Lab” broadcast a program called “The Bitter End” which focused on how doctors responded to questions about the kind of care they would want at a time when they had irreversible brain disease without a terminal illness.   The program comments on a compelling contrast between what the general public wants and what doctors who know how treatment at the end of life actually works. Note the bar graph which shows that doctors do not want to have the same kind of treatment that the general public might think they wanted.

After listening to this program and looking at the graph, you may want to consider what you would want.   Or at least ask: What is it that they know that I don’t?

There is a second rich resource on the web site: it is the reader reactions which are quite variable and a few of the themes that stand out:

·        Some physicians and nurses strongly criticized references to research as biased or lacking the latest data which shows higher levels of recovery from being resuscitated.  Others disagreed and completely endorsed the program as being realistic and important.  What does the internal disagreement mean? The short answer is that “you are on your own.”   Consistency of thought about what is the best course of action doesn’t exist.

·        Comments about the use of ventilators and using drugs to paralyze the patient were also intense.  Both doctors and nurses disagreed with each other as to what the effect was on the patient.  Again, what do the differences tell you about the state of treatment?  Is it possible that nurses, who spend more time with patients have a deeper insight into the patient experience?

·        These two patterns of comments may leave you with an unsettled feeling that some rather basic procedures are viewed differently by different medical personnel.  It can make decision making more complicated.

·        There are also a number of comments by listeners who share their experiences with friends, relatives or loved ones who either recovered from very serious medical problems or died.  Uniformly, the emphasis on having “the conversation” with your doctor, medical proxy and family members as to what you want is very important. “The conversation” is a frank discussion of the realistic aspects of the future health of the person in question.  Some doctors are good at this and others find it both awkward and difficult.  The latter group will be more inclined to avoid it.

Take time to read these comments with an eye to answering the questions asked.  It may help you find your voice for your end of life choices.

What is it that you would want in a life threatening situation?  If you are young, your answers may be different than when you are old.

Being Proactive about what you will and won’t accept as recommended treatment.

Butler, Katy “The Ultimate End of Life Plan”, Wall Street Journal September 6, 2013.  This is adapted from her 2013 book, “Knocking on Heaven’s Door: The path to a better way of Death”.

 In 2010 Katy Butler published an essay about her father’s death which articulated the many problems she encountered in  obtaining for him the care that he wanted.  For a variety of reasons it was not what he received.  Butler’s mother was profoundly impacted by this experience and elected to proactively manage her own passing by turning down opportunities for surgery – a decision which was based on her knowledge of the complications of heart surgery for someone her age.

The  essay is both an homage to her mother and a realistic description of the good but less than ideal death that her mother experienced. 

Read  with an eye to what you would do if you were faced with the same choices of surgery which might extend your life but also might seriously compromise your life.


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