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The Ways We Approach Death

Cancer often requires making difficult decisions in the face of uncertainty. By Sue Rochman

Danielle Michelle “Diem” Brown first found fame as a hard-charging contestant on the MTV reality series Real World/Road Rules Challenge.

During the taping of the show, now known as The Challenge, in November 2005, Brown revealed to the cast and producers that she had recently been diagnosed with ovarian cancer. By the time the show aired, she had started treatment, and her cancer had become one of the show’s storylines. But what permanently seared Brown in the public consciousness occurred when she returned to the series the following year: Facing a contest that required her to dive into muddy water, Brown took off the blond wig she had started wearing when she lost her hair to chemotherapy. It was a “real” moment for reality TV.

Brown continued to live her life out loud and in the public eye through six more seasons of the show—the most recent began airing in January—and as an entertainment reporter and People magazine blogger. This didn’t change when she learned in August 2014 that her ovarian cancer had recurred for the second time and was now in her colon and stomach. Or two months later, when her doctors told her the cancer had spread further, to her liver and lymph nodes. At that time, she told People, “It’s my personal perspective that you live as hard and as vigorously as you can. My goals are something I believe in, because I believe I’m going to make it. I’m going to have a family and get married and the whole American, 2½ kids, white-picket-fence dream.
 
Facing the End of Life
These organizations and resources can help you make your wishes known to your doctor.

Dying With Dignity
These resources can help you learn more about laws that permit physician-assisted dying.
Brown regularly tweeted and posted photos from her hospital room, and she was often described by friends, family and the media as “a brave warrior.” She embraced the warlike metaphors. But not all people facing cancer choose to approach it as a fight-to-the-end battle—or can. It was within the context of this prevailing representation of the cancer experience that Brittany Maynard, another vibrant young woman facing a devastating cancer diagnosis, publicized her decision to end her own life, on her terms.
 
Maynard had been diagnosed with brain cancer on New Year’s Day in 2014. Three months later, despite the treatments she’d had, the cancer, a grade II astrocytoma, progressed to an aggressive grade IV astrocytoma, also known as glioblastoma. By her doctor’s estimate, Maynard, 29, had six months to live. After learning that as the tumor grew and her brain swelled, she’d experience seizures, fatigue, increased pain and likely lose her ability to see and speak, Maynard sought out information about how she could take control of her death from cancer, which led her to Compassion & Choices, a Colorado-based organization focused on improving care for people who are dying. Working with the nonprofit, she garnered public attention with the release of a six-minute video in which she explained that she had moved from California to Oregon to take advantage of that state’s Death With Dignity Act, which would allow her to end her life with a doctor’s prescription for lethal medication.
“Whether we are positive or negative, if we had a mother or father die of cancer, our belief system and whether we believe in prayer—all of that will go into the way we will process disease.”
 
As a result, in October, while Brown was in the hospital undergoing every last available treatment, Maynard appeared on the cover of People and wrote a guest column for CNN, becoming the new face of a decades-long effort to make it possible for patients to have conversations about living with—and dying from—a terminal illness that include the option of physician-assisted death. Perhaps inevitably, the two women also became touchstones for many people living with cancer, prompting personal reflection on their own attitudes toward death and dying. On social media, the women’s choices were widely compared, with Brown boiled down to the “fighter” and Maynard the one who “gave up” and “lost hope.” Eduardo Bruera, a palliative care specialist at the University of Texas M. D. Anderson Cancer Center in Houston, says he understands why people would seize on this comparison. But, he cautions, the public portrayals of Brown and Maynard represent “two extremes” of dying. In reality, he says, “all of us are somewhere in the middle.”

Choosing Well
Many of the estimated 590,000 people expected to die of cancer 
in the U.S. this year may, at some point, have to determine where they see themselves on this spectrum.
 
Some will have lived with the disease for years. For others, the time from diagnosis to death will have been measured in only months or weeks. But all will have to make choices—about treatments, palliative care and, ultimately, how they hope to face their deaths. Most of these decisions will be deeply private, but they also have the potential to be shaped by the recent public declarations and deaths of Brown and Maynard.

Complicating these choices is the uncertainty that accompanies most terminal cancer diagnoses, says Bruera, who served on the Institute of Medicine committee that in September 2014 released the report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. “For some cancers we have a much higher certainty that the prognosis is not going to be good,” he says, “but there is never 100 percent certainty [if] or when death is going to happen.” This means patients must mesh the information they receive from their doctors about their prognosis with their own values and experiences. “Whether we are positive or negative, if we had a mother or father die of cancer, our belief system and whether we believe in prayer—all of that will go into the way we will process disease,” says Bruera. (See “Facing the End of Life.”)

03/26/2015
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