Are you concerned with your quality of death?

USA – At the end, they both required antipsychotics. Each had become unrecognizable to their families. On the day that Sandy Bem, a Cornell psychology professor, 65, was diagnosed with Alzheimer’s, she decided that she would take her own life before the disease obliterated her entirely. As Robin Marantz Henig writes in the New York Times Magazine, Bem said, “I want to live only for as long as I continue to be myself.”

When she was 34, Nicole Teague was diagnosed with metastatic ovarian cancer. Her husband Matthew writes about the ordeal in Esquire: “We don’t tell each other the truth about dying, as a people. Not real dying. Real dying, regular and mundane dying, is so hard and so ugly that it becomes the worst thing of all: It’s grotesque. It’s undignified. No one ever told me the truth about it, not once.

Matthew tells the truth, and it is horrifying. Over the course of two years, Nicole’s body becomes a rejection of the living. Extensive wounds on her abdomen from surgery expel feces and fistulas filled with food. Matthew spends his days tending to her needs, packing her wounds with ribbon, administering morphine and eventually Dilaudid; at night he goes into a closet, wraps a blanket around his head, stuffs it into a pile of dirty laundry, and screams.

These two stories bring into sharp focus what it looks like when an individual and her family shepherd death, instead of a team of doctors and a hospital. It’s a conversation that is being had more frequently in the US as the baby boomer population ages (pdf) and more Americans face end-of-life choices. As a nation, we are learning—in addition to our quality of life, we should pay attention to the quality of our death.

Preparation and personal responsibility

During Bem’s decline, she kept reminding herself, and a small group of friends and family, that she planned to take her own life. She ordered two bottles of pentobarbital from Mexico, a controlled substance in the US, which causes death in high doses.

Because assisted suicide is not legal in New York, Bem took great care to leave documentation so that no one would be held responsible for her death. Even in states that do have assisted dying laws, they are restricted to the mentally competent, a hurdle that most dementia or Alzheimer’s patients wouldn’t pass.

Bem’s story is eerily similar to the film “Still Alice,” starring Julianne Moore, who plays a Columbia linguistics professor diagnosed with early onset Alzheimer’s. Moore’s character leaves detailed instructions for herself on how to end her own life when she can no longer answer simple personal questions. For each, an accomplished academic, her force of intellect and will to carve her own path make the degradation of her mind all the more unbearable.

Families learn fear is worse than death itself

In each of these stories it is hard for their families to bear their loved ones’ dying too, a reminder of how it is really other people (families, doctors, the state) who have claims on our existence.

Emily, Bem’s daughter, bristles when her father Daryl (who’d separated from Sandy but became close again after her diagnosis) seems matter-of-fact about picking a month for for his ex-wife to die, but finally comes around. She understood why it was time for Sandy to go. “I think you nailed it,” she said. Daryl reminds himself of the primacy of Bem’s wish, pushing aside his own fear of losing her.

Bem took anti-nausea medicine, poured a glass of wine, and drank the pentobarbital. She was unconscious within five minutes, gone within four hours.

Choosing dignity before it is too late

The stories of others with terminal cancer, not just the elderly, are forcing us to consider that we’ve been dying in an undignified way. There are high profile cases, like that of 29-year-old Brittany Maynard, who suffered from terminal brain cancer and moved from California to Oregon, so she could end her life under its death with dignity law that’s become a model for other states. This week, Christy O’Donnell, 46, a California woman with aggressive lung cancer, has joined a lawsuit to fight for physician-assisted suicide.

In April, a feature titled “Death, Redesigned,” profiles IDEO’s chief creative officer, Paul Bennett and his desire to rethink the way we die. Jon Mooallem writes in California Sunday:

 He started zeroing in on all the unspoken decisions around that inevitability: the aesthetics of hospitals, the assumptions and values that inform doctors’ and families’ decisions, the ways we grieve, the tone of funerals, the sentimentality, the fear, the schlock. The entire scaffolding our culture has built around death, purportedly to make it more bearable, suddenly felt unimaginative and desperately out of date.

According to Death with Dignity, an organization that for 20 years has led the US fight for end-of-life choices, 15 states are considering death with dignity laws in this year’s legislative session. Each year, bills are drafted and fail. Only three states, Vermont, Oregon, and Washington, allow terminally ill patients to take their own lives.

Americans have poor awareness about end-of-life care (pdf) and are also resistant to discussing it because they believe it’s synonymous with giving up. Currently, the way that end-of-life care is provided in the US does not match the needs of patients who can’t be referred to hospice care until they are expected to die, within six months, which is often too late.

Photo: Military graveyard, by Pete Bobb.