The Critical Decision You Haven’t Made — But Should

It was just under a year ago, in April 2014, that 29-year-old Brittany Maynard was told she had six months left to live. Before being diagnosed with deadly brain cancer, Maynard had created no "advance medical directive," a legal document also known as a living will. This document spells out which medical treatments you’re willing to undergo if you develop an incurable or irreversible condition and lose your ability to communicate. When I spoke with Maynard in October, a month before she ended her life, not only had she created her living will, she’d also considered every detail of how her final days would unfold. This included her plan for how she would die: in bed, in her and her husband's Oregon home, surrounded by a select few loved ones, with soft music playing in the background. While Maynard’s case kicked off a nationwide debate about right-to-die laws, her story also shone the spotlight on end-of-life planning. Unlike other young women whose end-of-life battles played out on the national stage — such as Terry Schiavo, Karen Ann Quinlan, and Nancy Cruzan, all cases that made it to the Supreme Court — Maynard was able to set the terms of her own death. According to The Conversation Project, an organization dedicated to helping people discuss their preferences for end-of-life care, 82% of people think it’s “important” to record their wishes in writing, but only 23% have done so. And, an overwhelming 90% of us believe we should talk about end-of-life care with loved ones, but only 27% of us have. Thanks to medical advances that prolong life but don’t necessarily improve it, we’re dying longer and slower deaths than at any other point in history, with greater likelihood of incapacitation as we approach the bitter end. Every day in the U.S., 7,000 people die — a number that will surge as Baby Boomers continue to age. Our hesitation to talk about the end of life in advance means that instead of dying at home, with loved ones nearby, more and more people are dying in hospital beds after protracted, invasive treatments that they may not have chosen if only they’d been able to speak for themselves.

It’s not just seniors who have reason to plan ahead, as Maynard’s story demonstrates. Or, just ask Jennifer Stewart. At 20 years old, she’d been feeling unusually tired — exhausted, in fact. She chalked her fatigue up to her demanding job caring for toddlers at a day care, but a blood test at a routine checkup told a different story. Stewart’s platelet count was so low that she was in immediate danger of internal hemorrhage; her doctors told her she might not make it through the week. Stewart had acute myelogenous leukemia, a rare, fast-growing cancer in which the bone marrow produces cancerous cells or “blasts” that prevent the marrow from creating needed platelets and blood cells. She was instructed to fill out a living will right away. “Everything was so acute and so immediate and such a shock across the board,” Stewart remembers. “The last thing you think of at that point is anything having to do with advance directives or medical power of attorney — until you’re actually in the hospital and people are asking you these questions. I had no idea what I was doing, but I had to figure it out really quickly.” She knew that each of her parents had been forced to make decisions for a dying family member who hadn’t created a living will, and she was determined not to put them in that position again. Especially not with their own daughter. “I could picture my dad — former football player, big, burly guy — standing in front of the room...and just stopping people from coming in, [saying] ‘No, she’s gonna get better, you have to go away!’” Jennifer explains. She designated her parents as her healthcare proxies, but she was clear about her wishes: Regardless of how difficult it might be for her parents to “pull the plug,” if Jennifer “were to have no brain function, I did not want to be held on by artificial means,” she tells me.  Jennifer is now a marketing professional, volunteer for the organization Stupid Cancer, and 17-year survivor of both leukemia and a bone marrow transplant. But, she recognizes that her story could have ended much sooner. “Nobody plans to get cancer,” she points out. Nobody plans to get a phone call saying their brother has died in a car accident, either — the phone call that 34-year-old entrepreneur Abby Schneiderman received in 2012. Because her brother hadn’t created any sort of end-of-life plan, Schneiderman says, her family “witnessed what it was like to be in a situation where we had to make serious, important decisions at a time when no one should be having to make decisions.”

At that time, in a remarkable coincidence, Schneiderman and her business partner Adam Seifer were a year into developing their own online end-of-life-planning company, Everplans. While planning her wedding in 2010, Schneiderman began to wonder whether there were similar services available to people preparing for a different milestone: death. Today, Everplans’ vast library of articles addresses questions from what to wear to a funeral to how to write a living will. As Schneiderman describes, “We created a platform that helps people create and store and share all of the important information that their family needs in case something happens to them — wills, life insurance policies, healthcare proxies, advance directives, even burial wishes and online accounts.” With approachable language and a focus on younger audiences, organizations such as The Conversation Project, Stupid Cancer, and Everplans seek to make conversations about death easier for every adult — but, unsurprisingly, the subject remains highly uncomfortable. Case in point: As I was writing this story, my coworker suggested that I make a living will myself. I balked, unsettled by the prospect of recognizing my mortality on paper — I could afford to wait a few years, right? I knew, of course, that this was hypocritical; cancer, car accidents, and other manifestations of the unthinkable don’t “wait.” I called Judy Thomas, CEO of the Coalition for Compassionate Care of California, for guidance. Thomas recommends that when defining the parameters of their deaths, people consider their priorities for their lives. “That’s what it’s all about,” she emphasizes, “what’s important to you and your values.” People are always requesting “no heroic measures,” Thomas explains, but this vague assertion must be translated into preferences that allow people to live the lives they want — and to end them when they become the lives they don’t want. With this advice in mind, I downloaded New York State’s "Health Care Proxy And Living Will" form and began.

Designating proxies was easy enough: I’m single, and I'm lucky that I trust my parents to make decisions in my stead, so Mom went down as primary proxy, Dad as alternate. Next up: whether or not to to prolong life. Should I enter an “incurable” or “irreversible” condition, I decided, I wouldn’t want to hang on — not through cardiac resuscitation, or mechanical respiration, or artificial nutrition and hydration, or antibiotics. My attitude toward life-prolonging treatments aligns with the general wisdom among physicians, who are much likelier to be skeptical of these treatments — yes, the same ones that they administer — than the general public. If I’m never again going to eat Brie or recite 30 Rock jokes to friends, let me go without cracked ribs from CPR (which is drastically less effective than hospital dramas would have you believe), a perforated windpipe to allow for a breathing tube, or the risk of fluid from an IV drip seeping into my lungs. The ability to eat and talk with some independence counts among what Thomas would call my "values" — what’s important to me. On page four of the form, I opted for “treatment for alleviation of pain or discomfort,” even if it “hastens my death” (no question there, please literally drug me to high heaven). Finally, I checked the box approving the donation of “any needed organs, tissues, or parts.” If I’m not coming back, I’m not going to need them. Two friends looked on as I signed the form and then added their own signatures as witnesses — in New York, that’s all it takes for a living will to be legally binding. Total time spent planning my final days: 10 minutes. Instead of morbid, I feel accomplished, the way I do after finishing my taxes — like an Adult Who Takes Care of Business.

But, merely filling out a living will is not enough. If that will isn’t accessible to medical professionals and family members, it may as well not exist. “The biggest problem we see is people have created a document, but they didn’t share it with their surrogate decision-maker [or] family,” Thomas says. “That’s where you start to get disagreement among family members.” I made sure to scan the document and email it to my parents. (They haven’t responded. Death is awkward.) Of course, not everyone who creates a living will opts out of life-prolonging measures. Take Sarah, a 29-year-old actor and comedian who suffers from fibromyalgia, joint hypermobility syndrome, and chronic heartburn. While none of these conditions are life-threatening, when Sarah’s heartburn led doctors to recommend an endoscopy, she was nervous; it was around the same time that Joan Rivers died during the same procedure. So, Sarah sat down to outline her end-of-life wishes — just in case. Sarah is Catholic, and her belief in miracles guided her decisions. “I knew that I wanted basically all measures to be taken if something happened to me,” she tells me. “I’m one of the people who wants to be kept on life support. I want everything possible to be done, because I just have seen too many cases where people have been in comas for years and then they come out of it, or have been pronounced brain-dead and then they start having awakenings... I thought, ‘Well, why assume that I’m not going to be one of those people?’”

Any wishes at all can be expressed in a living will, and once Sarah began the process of creating one, she thought of preferences she had never considered. “If I was still young and my husband and I didn’t have children,” she shares, “I wanted some of my eggs to be harvested so that he could still have children with me even if I wasn’t able to have the baby myself. And, this is kind of a weird, silly thing, and it was the first thing that made both my husband and I cry while going through this — but I really don’t like being left alone in the dark, especially at night. So, I made a note about wanting to have the television left on a station that wouldn’t have anything scary or disturbing on, The Disney Channel or something, so I wouldn’t feel alone.” While the locked-in syndrome that Sarah describes is rare, it does occur, and Sarah’s hypothetical approach to dealing with it illustrates the core purpose of living wills: ensuring agency for the patient, and clarity for the family. Regardless of their end-of-life preferences, everyone with whom I spoke expressed relief  that their family members would never struggle to make life-or-death choices on their behalf. “More than anything, that’s what makes me feel better,” Sarah says. “My family won’t have to deal with the burden of making tough decisions without any guidance from me.”  Living wills can be changed as life circumstances and values evolve, but they are an indispensable reflection of what matters to us today. “What people don’t realize,” Schneiderman stresses, “is that if you don’t plan or share your decision, there actually is a plan in place for you. But, rather than it being decided by you, it’s going to get decided by strangers, doctors, courts, [or] the government” — or, possibly, mishandled by family or friends. Ultimately, living wills are not about death as much as they're about the living that happens right before death — and each of us has the power to decide how that unfolds.