After three hours, Mapstone gave a preliminary diagnosis: amnestic mild cognitive impairment. At first Sandy was relieved — he had said mild, hadn’t he? — but then she caught the look on his face. This is not a good thing, Mapstone told her gently; most cases of amnestic M.C.I. progress to full-blown Alzheimer’s disease within 10 years.
When Sandy went back to the waiting room to meet Daryl, she was weeping uncontrollably. Between sobs, she explained the diagnosis and the inevitable decline on the horizon. She felt terror at the prospect of becoming a hollowed-out person with no memory, mind or sense of identity, as well as fury that she was powerless to do anything but endure it. With Alzheimer’s disease, she would write, it is “extraordinarily difficult for one’s body to die in tandem with the death of one’s self.” That day at Mapstone’s office, she vowed that she would figure out a way to take her own life before the disease took it from her. (...)
On a quiet Friday morning in November 2010, Sandy sat down with a mug of honey-ginger tea to read two books that Daryl had brought her. By this point, a year and a half after her amnestic M.C.I. diagnosis, she had progressed to what Duffy said was Alzheimer’s disease. She had retired from Cornell, but she was doing well. She could still travel alone to familiar destinations, including Austin, Tex., where Emily was living. Jeremy had temporarily moved back home to be with her. She could read novels, even difficult ones like Cormac McCarthy’s “The Road.” She played tennis, gardened and went for walks around Ithaca with a handful of friends, most of them former colleagues from Cornell. She saw a few psychotherapy patients. One would later say that even though Sandy was having some trouble remembering words, “it didn’t really matter. In a therapy relationship you’re talking more about emotions — and in that regard, she didn’t miss a beat.”
The first book on her table that Friday morning was “Final Exit.” Sandy read it in the early 1990s when it was published; even then she was intrigued by the argument of the author, Derek Humphry, in favor of self-directed “death with dignity” for people who were terminally ill. The second was a newer book by the Australian right-to-die advocate Philip Nitschke called “The Peaceful Pill Handbook.” The pill in the title (though not literally a pill; it comes in liquid form) was Nembutal, a brand name for pentobarbital, a barbiturate that is used by veterinarians to euthanize animals and that is also used in state-sanctioned physician-assisted suicides. After reading about it, Sandy thought pentobarbital was what she was looking for. It was reliable, fast-acting and — most important to her — a gentle way to die. It causes swift but not sudden unconsciousness and then a gradual slowing of the heart.
There could be complications, of course, like vomiting; Nitschke and his co-author, Fiona Stewart, recommended taking an anti-nausea drug a few hours before taking the fatal dose to minimize that risk. They warned that pentobarbital is detectable in a person’s body after death — but that didn’t matter to Sandy. In fact, she preferred having people know that she died by her own hand.
One morning during one of Sandy’s frequent phone calls to her sister in Oregon, she told her about the decision to use pentobarbital. Sandy had a special relationship with Bev, who was six years younger. When Sandy married Daryl, Bev was 14, and Sandy invited her sister to live with them rather than with their parents, whose unhappy marriage made it feel, as Sandy put it in her memoir, as if “chaos could erupt at any moment.”
A year before Sandy received her diagnosis, Bev was found to have Stage 4 ovarian cancer. The sisters had discussed the fact that Oregon law allows people with terminal illnesses to take their own lives. Sandy now envied Bev’s situation. “I don’t think I have ever been as jealous about anything in my life as I am about this,” she wrote in her journal shortly after she saw Mapstone. It was weeks before she could get past that jealousy and take Bev into her confidence.
But even if Sandy had lived in Oregon, her Alzheimer’s disease would have precluded her from getting help in taking her own life. States that allow for assisted dying require two doctors to certify that the person has a prognosis of less than six months to live, and most people with Alzheimer’s have no such prognosis. They also require that the person be declared “of sound mind,” a difficult hurdle for someone whose brain is deteriorating. (...)
Ronald Dworkin, an influential legal scholar and the author of “Life’s Dominion: An Argument About Abortion, Euthanasia and Individual Freedom,” wrote about a kind of hierarchy of needs for people in Sandy’s situation, who want their autonomy to be respected even as disease changes the essence of who they are and what autonomy means. He differentiated between “critical interests” (personal goals and desires that make life worth living) and “experiential interests” (enjoying listening to music, for instance, or eating chocolate ice cream). Sandy was appreciating her experiential interests — playing with Felix and working in her garden — but her critical interests were far more sophisticated and were moving out of her reach. Critical interests should take priority when making end-of-life choices on behalf of someone whose changed state renders her less capable of deciding on her own, Dworkin wrote, because critical interests reflect your true identity. The new Sandy seemed to love being a grandmother, but it was important to take into account what the old Sandy would have wanted.
When Sandy went back to the waiting room to meet Daryl, she was weeping uncontrollably. Between sobs, she explained the diagnosis and the inevitable decline on the horizon. She felt terror at the prospect of becoming a hollowed-out person with no memory, mind or sense of identity, as well as fury that she was powerless to do anything but endure it. With Alzheimer’s disease, she would write, it is “extraordinarily difficult for one’s body to die in tandem with the death of one’s self.” That day at Mapstone’s office, she vowed that she would figure out a way to take her own life before the disease took it from her. (...)
On a quiet Friday morning in November 2010, Sandy sat down with a mug of honey-ginger tea to read two books that Daryl had brought her. By this point, a year and a half after her amnestic M.C.I. diagnosis, she had progressed to what Duffy said was Alzheimer’s disease. She had retired from Cornell, but she was doing well. She could still travel alone to familiar destinations, including Austin, Tex., where Emily was living. Jeremy had temporarily moved back home to be with her. She could read novels, even difficult ones like Cormac McCarthy’s “The Road.” She played tennis, gardened and went for walks around Ithaca with a handful of friends, most of them former colleagues from Cornell. She saw a few psychotherapy patients. One would later say that even though Sandy was having some trouble remembering words, “it didn’t really matter. In a therapy relationship you’re talking more about emotions — and in that regard, she didn’t miss a beat.”The first book on her table that Friday morning was “Final Exit.” Sandy read it in the early 1990s when it was published; even then she was intrigued by the argument of the author, Derek Humphry, in favor of self-directed “death with dignity” for people who were terminally ill. The second was a newer book by the Australian right-to-die advocate Philip Nitschke called “The Peaceful Pill Handbook.” The pill in the title (though not literally a pill; it comes in liquid form) was Nembutal, a brand name for pentobarbital, a barbiturate that is used by veterinarians to euthanize animals and that is also used in state-sanctioned physician-assisted suicides. After reading about it, Sandy thought pentobarbital was what she was looking for. It was reliable, fast-acting and — most important to her — a gentle way to die. It causes swift but not sudden unconsciousness and then a gradual slowing of the heart.
There could be complications, of course, like vomiting; Nitschke and his co-author, Fiona Stewart, recommended taking an anti-nausea drug a few hours before taking the fatal dose to minimize that risk. They warned that pentobarbital is detectable in a person’s body after death — but that didn’t matter to Sandy. In fact, she preferred having people know that she died by her own hand.
One morning during one of Sandy’s frequent phone calls to her sister in Oregon, she told her about the decision to use pentobarbital. Sandy had a special relationship with Bev, who was six years younger. When Sandy married Daryl, Bev was 14, and Sandy invited her sister to live with them rather than with their parents, whose unhappy marriage made it feel, as Sandy put it in her memoir, as if “chaos could erupt at any moment.”
A year before Sandy received her diagnosis, Bev was found to have Stage 4 ovarian cancer. The sisters had discussed the fact that Oregon law allows people with terminal illnesses to take their own lives. Sandy now envied Bev’s situation. “I don’t think I have ever been as jealous about anything in my life as I am about this,” she wrote in her journal shortly after she saw Mapstone. It was weeks before she could get past that jealousy and take Bev into her confidence.
But even if Sandy had lived in Oregon, her Alzheimer’s disease would have precluded her from getting help in taking her own life. States that allow for assisted dying require two doctors to certify that the person has a prognosis of less than six months to live, and most people with Alzheimer’s have no such prognosis. They also require that the person be declared “of sound mind,” a difficult hurdle for someone whose brain is deteriorating. (...)
Ronald Dworkin, an influential legal scholar and the author of “Life’s Dominion: An Argument About Abortion, Euthanasia and Individual Freedom,” wrote about a kind of hierarchy of needs for people in Sandy’s situation, who want their autonomy to be respected even as disease changes the essence of who they are and what autonomy means. He differentiated between “critical interests” (personal goals and desires that make life worth living) and “experiential interests” (enjoying listening to music, for instance, or eating chocolate ice cream). Sandy was appreciating her experiential interests — playing with Felix and working in her garden — but her critical interests were far more sophisticated and were moving out of her reach. Critical interests should take priority when making end-of-life choices on behalf of someone whose changed state renders her less capable of deciding on her own, Dworkin wrote, because critical interests reflect your true identity. The new Sandy seemed to love being a grandmother, but it was important to take into account what the old Sandy would have wanted.
by Robin Marantz Henig, NY Times | Read more:
Image: Paul Fusco/Magnum Photos
