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.
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.
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.”
We will all, at some point, die. But knowing this doesn’t always carry over to thinking about how we want to experience our last days.
“We are sort of a death-denying culture,” says Timothy E. Quill, an internist who directs the Palliative Care Program at the University of Rochester Medical Center, in upstate New York. “You have to have courage to think about those things.”
One of the important questions to consider, Quill says, is “if you got sick, would you want a full-court press, comfort-oriented care or a combination of both?” For some, this may be easy. For others, arriving at the answers may involve extensive conversations with a doctor, chaplain, friend, family member or social worker at an organization that provides palliative care or hospice services.
Once you decide what you want, says Quill, the next step is to work with your health care team to fill out a form that can specify your current medical treatment preferences and will make your wishes known to your doctors. This document is currently available in more than 25 states and is known by a variety of names, such as the Physician Orders for Life-Sustaining Treatment form or the Medical Orders for Life-Sustaining Treatment form. You should also create an advance directive, which states the kind of treatment you would want if you lose the ability to speak for yourself in the future.
Organizations and resources that can help you figure out what you want and then aid you in developing appropriate documentation include:
This program of the National Hospice and Palliative Care Organization offers information and support to patients and loved ones who are making decisions about end-of-life care. On the organization’s website, you can find information about palliative and hospice care, guidance on talking about these choices with your family and health care professionals, and advance directives for all 50 states, the District of Columbia and Puerto Rico.
Consumer’s Tool Kit for Health Care Advance Planning
Developed by the American Bar Association Commission on Law and Aging, this tool kit can help you identify what is or would be important to you when facing a serious illness and how to talk about these issues with loved ones.
Physician Orders for Life-Sustaining Treatment Paradigm
This organization can help you understand what the Physician Orders for Life-Sustaining Treatment forms are, in which U.S. states they are available, who should consider using such a form, and how to get one.
This document, available online, meets the legal requirements for an advance directive in 42 states. In the other eight states, your completed Five Wishes can be attached to your state’s required form. The document allows you to identify the person you want to make care decisions for you when you can’t; the kinds of medical treatments you want and don’t want; how comfortable you want to be; how you want people to treat you; and what you want your loved ones to know.
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.
At the outset, most cancer patients choose similar paths. “Initially, almost everyone will try treatment,” says Timothy E. Quill, an internist who directs the Palliative Care Program at the University of Rochester Medical Center, in upstate New York. “But as the probability of success gets lower and lower, then people take different tacks and Brittany and Diem are good illustrations of the edges of those tacks.”
The majority of terminally ill patients fall somewhere in between, and they often face a series of decisions as their cancer progresses: whether to seek out or join research studies of new treatments; whether the side effects of a treatment have begun to outweigh the benefits; and how to balance quantity versus quality of life.
Ultimately, most patients’ ability to get the care they want will be in the hands of their doctors. That’s why, says Peg Sandeen, the executive director of the Death With Dignity National Center, based in Portland, Oregon, patients should be aware of their options and make their beliefs known. “I think it’s important that after a cancer diagnosis, you talk about the entire process and the worst-case scenario and what you might want to do, to see if the doctor understands and supports that,” she says. Having this conversation “doesn’t mean you are giving up hope. It means that you want to be sure you have a doctor who will treat you in a way that is consistent with your values.”
Quill says he tries to help people think through all aspects of their decisions. “If people want to fight until the end,” he says, the cancer care teams at the University of Rochester will support that desire and try to find clinical trials. But the palliative care team also tries to get those same patients “to think about getting prepared in case it doesn’t work.” People can “fight to the end,” he says, and also “make sure they have a will and don’t leave their family situation in shambles. … I think the mistake some people make is that they have all their eggs completely in one camp or in the other. I might have a patient who decides against treatment, but I will keep my eyes open, and if I see a trial option that looks easy and promising, I’ll bring it up. You don’t want to make things so totally one way or the other that you lose opportunities.”
A patient’s family members can also influence and affect how the patient chooses to approach terminal illness. “The most common situation is the patient telling us privately that they want to stop treatment because it is too hard but that their family wants them to keep going and keep fighting,” says Quill, who also is a co-editor of the book
Physician-Assisted Dying: The Case for Palliative Care and Patient Choice.
“Many times patients don’t feel strong enough to stand up to, say, a spouse who comes in and says, ‘You can’t give up.’ We try to help [patients] understand it’s their choice.” Sometimes these patients will stop treatment, he says, and other times they will accept treatment because that’s what their family wants.
It is important for patients to feel that they can ask questions about what stopping treatment would entail or what they can expect as their cancer progresses. Patients who are considering physician-assisted death will need information about where it is legal, how to find a doctor who will assist them, and how to talk about their choice with their family. They should also know that organizations that provide information about this option, such as Death With Dignity and Compassion & Choices, also recognize that the patients they are helping may be currently doing well on their cancer treatment. “People can choose to find a way to have this option available,” says Quill, “even though they also want to take treatment that has a reasonable chance of helping.”
Ultimately, says Quill, Maynard’s and Brown’s stories, “speak to the core issue, which is trying to learn what the patient’s views and values are … and letting them guide” the intensity of treatment or its cessation. “It is their views and values that [doctors] should adapt to.”
Three U.S. states—Oregon, Vermont and Washington—have passed laws that allow doctors to give mentally competent, terminally ill adults a prescription medication that can hasten their death. Currently, lawmakers in about two dozen other states and the District of Columbia are considering similar legislation. In February 2015, physician-assisted dying was legalized in Canada by the Supreme Court of Canada.
The following resources can help you learn more about these laws:
Compassion & Choices
Death With Dignity National Center
Dying With Dignity Canada
In general, says Bruera, “we tend to die the way we lived.” That was certainly true for Maynard and Brown.
Maynard, says Sandeen, “showed us an alternative, and she showed us what it means to participate in that choice.” She also demonstrated that “if you reject the war metaphor or look into this form of dying, that doesn’t mean you gave up. Brittany Maynard did not give up. She had a diagnosis that would be devastating for anyone, especially a very young woman. There is this idea that you valiantly fight to the end, and I would argue that she did that. She didn’t give in or give up, but rather, she took control.”
Maynard made that clear in her guest column for CNN, explaining: “I am not suicidal. If I were, I would have consumed that medication long ago. I do not want to die. But I am dying. And I want to die on my own terms.”
Brown, in turn, shared a decade’s worth of lessons on what living with cancer as a chronic illness can look like. She took part in Stand Up to Cancer (for which the American Association for Cancer Research is the scientific partner), hosted the MTV.com special Surviving Cancer, and founded MedGift.com to help people with health issues organize the support they need. As she told People, “I want people to know that the fight is worth it. And that’s something that’s so important for me.”
Maynard chose to die by taking medication that would end her life on Nov. 1, 2014—less than three weeks shy of her 30th birthday. Brown died 13 days later, at age 34. Both women were surrounded by those they loved.
March 26, 2015