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May 15, 2015

How one woman picked 'the last day of her life'

Daily Briefing

Writing in the New York Times this week, Robin Marantz Henig profiled Cornell professor Sandy Bem, who voluntarily ended her life last year before succumbing to Alzheimer's disease and losing the ability to make the choice for herself.

When Bem was diagnosed with amnestic mild cognitive impairment (MCI) in 2009, her doctor warned the then-64 year old that most cases of amnestic MCI develop into Alzheimer's disease within 10 years. "That day… she vowed that she would figure out a way to take her own life before the disease took it from her," Henig writes.

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A pioneer in gender studies and a licensed psychotherapist, Bem struggled with the idea of mental decay. Writing in her journal, she explained, "What I want is to die on my own timetable and in my own nonviolent way." According to Henig, close family and friends did not attempt to talk her out of her decision, knowing that Bem was unlikely to change her mind.

Although Bem understood the general progression of Alzheimer's disease and its symptoms, she struggled to decide when and how she wanted to end her life, knowing she had to do so before she was no longer capable of making such choices for herself.

By 2010, Bem had developed full-blown Alzheimer's and began taking medicine to slow the symptoms of the disease. But Bem's reaction to her grandson Felix surprised her loved ones. A woman who had never seemed excited about grandchildren formed a strong bond with her daughter's new son, and those in her inner circle "wondered what it would mean for her original plan," according to Henig.

As Bem was losing her mind, legal scholar Ronald Dworkin suggests that Bem could still appreciate her "experiential interests"—like spending time with her grandson or eating delicious foods—even as her "critical interests"—like personal goals and desires that made her want to live—moved out of her reach. Dworkin suggests that critical interests should take priority because they reflect a person's true identity.

And at heart, Bem's wishes remained unchanged. 

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In summer 2013, Bem was told that her treatments could keep her functioning enough to help care for her grandson, Felix, until August 2014. But those treatments cost her $6,000 every two weeks. 

In October, she ordered pentobarbital from a company in Mexico.  "For the time being, she could leave the pentobarbital on a shelf, comforted by the knowledge that it was there," Henig writes.

Around Christmas, Bem's decline sped up. "Sandy no longer felt it made sense to spend thousands of dollars in the hope of staying a little more functional a bit longer for Felix's sake," Henig writes. She informed her husband—with whom she had been separated for years, but who was supporting her through her mental decline—that she wanted to stop the treatments and discuss a good time for her to end her life. "[T]rying to stay focused on the task at hand, pre-emptively shutting down thoughts about what it would really mean to lose her," they agreed on June. Later, as Bem started to feel that she was deteriorating quickly, they set the date for May 20.

Her daughter Emily struggled with the choice. "Emily felt as though she was defending her mother's life against everyone who wanted her to end it," Henig writes. But faced with the realization of her mother's deterioration, Emily began to understand.

On May 18, loved ones gathered to celebrate Bem's life. On May 19, the family spent one last day together, and Emily came to feel that her mother had found an appropriate moment to end her life.

On May 20, Bem took steps to make sure that no one would be held responsible for her death, printing out and signing an earlier declaration that she wanted to end her life and no doctor or family member had helped her do it. She went for a walk with her husband, and watched a movie with her family. At 5:30 p.m., she took an anti-nausea medicine, drank a glass of wine, and swallowed a large dose of pentobarbital as her husband kept her company.

Henig writes, "Daryl watched her for a while, not quite feeling anything. Still to come were the calls to 911 and the coroner and the undertaker, and the writing up of the death notice, highlighting the reasons for Sandy’s decision. Still to come, too, was the brutal reality of what it would feel like for Sandy to be completely gone from his life" (Henig, New York Times, 5/14).

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