My Mom—and the Case for Assisted Death

Originally published in The Free Press

I was 11 or 12 years old when my father called me into the kitchen to break the news. My mother was by his side weeping. “I feel like my body has betrayed me,” she said. She had been diagnosed with breast cancer.

My mother was the healthiest person I have ever met. I never saw her have a drink, except perhaps on New Year’s Eve, and then only half a glass of champagne. She preferred to drink pure vegetable juice daily—a brutal, homemade concoction that she refused to cut with anything sweet. A talented yogi, she had an endearing habit of breaking into headstands almost at random. At 50 years old, she looked 35 at most.

But not even the world’s healthiest lifestyle could protect against a disease that strikes 1 in 8 women, sometimes as a result of genetic predisposition. Whatever the underlying cause of its onset, her tumor was swiftly extinguished through the miracles of modern medicine, which have cut the breast cancer mortality rate by 58 percent from 1975 to 2019. By the time I entered high school, she seemed healthy again—back to daily vegetable juice, yoga, and working on her PhD dissertation. Her skin was glowing. All was right in the world again.

Until one day she disappeared.

It was not unusual for my mother, who was then 53, to go on a retreat for a few days, often to pursue her dissertation research on Ayurvedic medicine in the United States. So when she left our home in Montclair, New Jersey, I barely registered her departure, and certainly did not connect it to her recent complaints about hip pain, which seemed normal enough for a middle-aged adult. But when a few days became a few weeks, and a few weeks stretched to well over a month, I began to wonder just how long a “retreat” could last.

My suspicions were soon put to rest. It was winter of my junior year (I remember because it was the same day that my then-girlfriend, bucking gender norms, asked me to prom) when my father, no longer able to keep up the facade, told me that her cancer had returned and spread to her bones. Her “retreat” was, in fact, a medical facility in Arizona where she was receiving chemotherapy.

Seeing my mother at the airport, after months apart, was the first of two major turning points for me. Up until then, I had only experienced sadness and anxiety about her illness. I had not yet experienced shock and horror. In a few short months, as I had grown stronger and taller, she had not only become thinner but several inches shorter. Only her face was recognizable. Her hips were visibly asymmetric, turning what was once an elegant stride into an awkward gait.

The next two years of my family’s life would be defined by my mother’s attempt to battle against stage 4 bone cancer. There is a grim cliché in the cancer world: The thing about stage 4 is that there is no stage 5. I probably hadn’t heard it at the time, but it wouldn’t have mattered if I had. I simply did not, could not, consider the possibility that my mother might die.

Throughout my senior year, her body deteriorated. When I came home from school, I would notice her awkward gait worsening, her grimaces intensifying. Before long, she could walk only short distances. It is hard to say what was worse—the pain inflicted directly on her by the tumors expanding inside her bones, or indirectly by the side effects of attacking them with bags of poison.

But even when the cancer spread from her skeleton to her liver, death was nowhere on my mental horizon. Years later, I would discover one of my diary entries from the time, in which I had written, earnestly, “I think my mom will live to be 100.”

“When I came home from school, I would notice her awkward gait worsening, her grimaces intensifying. Before long, she could walk only short distances.”

The moment that pierced my delusional optimism—the second major turning point—was when my father sat me and my older sister down and said, “Your mother’s life is no longer measured in years, but in months.” The five-year survival rate for metastatic liver cancer alone is 4 percent. They don’t even bother to list numbers for patients in my mother’s situation: cancer that migrates from the breast to the bone and the liver. At that moment, however, it was not any statistic that convinced me; it was the look on my father’s face. I accepted, for the first time, that it was not a matter of if she was going to die, but when. And, crucially, how.

My mother spent her last two months at one of the top hospitals in the country, first in palliative care, and eventually in hospice. Most of the time she was in pain. There was morphine on tap, along with every other pain-management drug that Western medicine can legally provide. And yet the pain defeated every attempt to tame it. Eventually she could not bear it.

I cannot pretend to know what it feels like to have tumors expanding inside your skeleton, pressing on your nerves and spinal cord—to have one’s body rearranged from the inside. Nor can I imagine how the realization that the pain has no higher purpose—that you’re no longer fighting any battle, just waiting to die—might destroy whatever resilience had previously been sustaining you. What I can say is that, from the outside, it looked indistinguishable from being tortured.

The only saving grace in my mother’s case was that she died somewhat sooner, and less painfully, than she otherwise would have—and on her schedule, surrounded by her family. That is because the doctors at the hospital helped her die, though it was illegal for them to do so. (For that reason, I am not saying where she got her final treatment.)

This was not a decision she came to lightly or quickly. She faced two choices: (1) to die painlessly on a day of her choosing, surrounded by her family, or (2) to experience extreme and escalating pain for the next few weeks, and then die at a random time, possibly alone. She chose the former, as would I if I were in the same situation, and the doctors helped her do it via a high dose of morphine. As a result, we all got to say our last words to her, and we were all in the room with her the moment she passed.

My mother experienced the early stages of what polite society calls a “bad death.” It is a term that I cannot use except in scare quotes—the same way one might call Adolf Hitler a “bad guy.” It manages to be accurate while entirely missing, and indeed minimizing, the gravity of the subject. If you haven’t seen a “bad death,” then you’re lucky. If you have seen one, then you are never going to unsee it.

I have told my mother’s story not because I think it is remarkable or unique, but because I think it is more common than you’d imagine. It is impossible to say how many illegal assisted deaths occur. Any doctor who admitted to performing one would in theory risk prosecution, as in the high-profile case of Dr. Jack Kevorkian, an American doctor and euthanasia advocate who helped over 100 patients die in the 1990s. Nicknamed “Dr. Death,” he was tried a total of five times, with the final trial ending in a conviction for second-degree murder. For others, it is not prosecution but internal investigations they must fear. In one survey, 4 percent of American palliative care doctors said they had been formally investigated for hastening the death of a patient. Such investigations are a risk taken by doctors like my mother’s who help their terminally ill patients die.

Its illegality comes with other downsides. Besides the fact that some doctors may not be willing to provide a medically assisted death at all, the doctors who are willing to perform it (usually for reasons of personal conscience) must face the other elements in the hospital whose interest is in protecting the hospital from liability. In our case, a young woman we had never seen before barged into the room just hours before my mother died and explained in loud legalese that the hospital did not sanction euthanasia and was absolutely not going to help her die. She disappeared as quickly as she came. I’ve never forgotten how disrespectful, indeed jarring, her contribution was.

One of the few cultural venues I have seen grapple with euthanasia was the hit show House, M.D., which aired on Fox from 2004 to 2012. In an episode called “Known Unknowns,” Dr. Wilson, the hospital’s top oncologist, decides to give a speech at a medical conference breaking the silence about the practice. Ultimately, to protect his friend from legal trouble, Dr. House gives the speech in his stead. The opening line is “Euthanasia: Let’s tell the truth. We all do it.” The crowd of oncologists reacts with shock, not because they disagree, but because they’d never seen anyone say it openly. A fellow oncologist comes up to him and thanks him for his bravery.

One can easily dismiss a fictional television show, but fiction may be the safest venue in which to discuss a practice that is illegal, but in many cases, morally required—or so I would argue. As to its scope, all I can say is that the doctors who helped my mother die did not give me the impression that it was their first time. Given that it remains illegal in 39 U.S. states, it is not hard for me to imagine that it happens every day.

“Years later, I would discover one of my diary entries from the time, in which I had written, earnestly, ‘I think my mom will live to be 100.’ ”

People have a false reverence for letting “nature take its course,” as if there is something romantic about even the most brutal ways in which Mother Nature can author our final moments. (Though for whatever reason, far fewer are seduced by this falsehood when it comes to their terminally ill and suffering pets.) While there may be some silver linings to losing a parent—one grows and matures; one internalizes the Hallmark card cliché that life is short and precious—I can say from experience that there is no silver lining to watching a loved one die in excruciating agony. It is a trauma without a lesson.

If there is one I can strain to generate, it’s the fact that the experience will inoculate you against some of the spurious arguments against “assisted dying” laws, such as the one being debated in the UK Parliament right now. If the bill becomes law, then terminally ill people with a prognosis of six months or less—people in my mother’s category—would, at their own request, be able to self-administer a fatal cocktail pending the approval of two doctors and a High Court judge.

The majority of the British public supports the idea. In America, Pew has found public opinion to be split right down the middle, whereas Gallup has found that a majority have supported the policy from the 1990s through to the present. But the opposition, on both sides of the Atlantic, remains fierce—motivated by false concerns about a “slippery slope” and, to be frank, ignorance.

The kind of ignorance one sometimes hears in this debate is that we don’t need assisted dying, we just need better palliative care. This view holds that Western medicine has more or less solved the problem of severe pain. Cases like my mother’s, in which even our best palliative care could not stamp out such pain, are thought to be vanishingly rare—lightning strikes not worth building policy around.

But my mother’s case is instructive. She contracted the most common type of cancer a woman can get, which metastasized in one of the most common ways, and got the best hospice care available to upper-middle-class Americans. Yet she still experienced unbearable pain in her final chapter. Nor is this merely anecdotal. A recent study of over 300,000 terminally ill patients in Sweden, a country not exactly known for its bad medical care, found that 35 percent of those who died from cancer experienced “severe forms of pain” in their last week.

The most substantive argument trotted out against assisted dying is that it would lead to a slippery slope: First it’s terminally ill adults, then it’s almost terminally ill adults, then it’s the disabled, and before long, it’s depressed teenage girls. Once we admit the principle that suffering is a valid reason to end your life, the thinking goes, we will have no arguments to fend off the activists who will expand the categorization.

But the notion that we’ll inevitably slide from cases like my mother’s to allowing anxious teenagers to off themselves is far-fetched, not only because the two categories are easy to distinguish, but also because the experiment has been run, and it hasn’t happened. Oregon has allowed assisted dying—strictly for the terminally ill with six months to live—longer than any other jurisdiction on Earth. And since the law was passed in 1997, it has never expanded an inch outside of those boundaries. The same is true in other places where it has since been legalized, like Australia and New Zealand.

Critics point to the examples of Canada, the Netherlands, and Belgium, where horror stories do exist. In the Netherlands, for instance, a 29-year-old autistic woman with depression successfully applied to commit suicide earlier this year. Belgium, meanwhile, saw a case in which a man with dementia was killed not at his own request, but at his family’s. In Canada, a man was granted the right to an assisted suicide because of “hearing loss.” I agree with the critics who view these cases as profoundly disturbing.

However, the horror stories from these countries actually cut against the “slippery slope” argument, because none of these countries ever had a policy that was restricted to the terminally ill to begin with. Canada’s bill C-14, the law that first legalized assisted suicide, was open to anyone for whom death is a “reasonably foreseeable” consequence of an “incurable illness”—which could mean almost anything. In the Netherlands’ first assisted dying law, patients needed only to have an “incurable illness” (not a terminal one) and experience “unbearable suffering,” which is highly subjective. And in Belgium, too, assisted dying was open to patients who were not terminally ill right from the start.

Assisted dying, writes Hughes, represents an opportunity to prevent an immense amount of needless suffering in the world.

Instead of a slippery slope, what has emerged over the past three decades are two distinct policies: one restricted to people on their deathbed and exemplified by Oregon, Australia, and New Zealand; and the other open to anyone who is “suffering” and exemplified by the Benelux nations and Canada, without any slippage between the two. It is not a coincidence that all the horror stories come from the latter. The lesson for the rest of the world is not to throw out assisted dying altogether, but to copy the policy that works, and avoid the policy that doesn’t.

Aside from the major objections, critics have leveled many practical objections: Do doctors always know when someone has six months to live? Are fatal drugs always painless? What if relatives pressure someone to commit suicide? I may go through these one by one some other time, but here I will simply say this: Once you understand how much suffering is on the other side of this moral equation—that is, once you understand just how bad “bad deaths” are—then you must view these practical objections as problems to be addressed, rather than as reasons to jettison the whole policy.

It is commonly said that a huge percentage of our healthcare spending comes in the last year of life. But the far more important corollary is rarely said: In many cases, a huge portion—perhaps a majority—of our lifetime suffering comes not just in the last year, but in the last few months. Assisted dying therefore represents an opportunity to prevent an immense amount of needless suffering in the world. If my mother’s story can help even one person come around to this view, then I can say that she did not suffer completely in vain.