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  • How Do I Make Sense of My Mother’s Decision to Die?

    How Do I Make Sense of My Mother’s Decision to Die?

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    My mom could always leap into the coldest water. Every summer when we visited my grandma in upstate New York, my mom dove straight into the freezing lake, even when the temperature outdoors hit the 50s. The dogs, who usually trailed her everywhere, would whine in protest before paddling after her, and the iciness left her breathless when she surfaced. “Just jump, Lil,” she’d yell to me, laughing, before swimming off to vanish into the distance.

    But I never could. I didn’t think much about that difference between us, until I flew north to be with her on the day she’d chosen to die.

    When my mom found out in May last year that she had pancreatic cancer, the surgeon and the oncologist explained to our family that cutting out her tumor might extend her prognosis by about a year; chemotherapy could tack on another six months. A few days later, my mom asked if we could spend time together in Seattle over the summer, if we could get lemonade at the coffee shop while I was there, if I wanted to play Scrabble before I left. “Yeah, of course,” I said. “But—” She interrupted me: “I’m not getting surgery.”

    After a decade of Parkinson’s disease, my mom already experienced frequent periods of uncontrolled writhing and many hours spent nearly paralyzed in bed. That illness wounded her the way losing vision might pain a photographer: Throughout her life, she had reveled in physicality, working as a park caretaker, ship builder, and costume designer. Now, plagued by a neurological disorder that would only worsen, she didn’t want to also endure postoperative wounds, vomiting from chemo, and the gloved hands of strangers hefting her onto a bedpan after surgery. Nor did she want to wait for the pain cancer could inflict. Instead, my mom said, she planned to request a prescription under Washington’s Death With Dignity Act, which allows doctors, physician assistants, and nurse practitioners to provide lethal drugs for self-administration to competent adult residents with six months or less to live.

    As a doctor myself, I’ve confronted plenty of death, yet I still found myself at a loss over how to react to my mom’s choice. I know that the American tropes of illness—“battling to the end,” “hoping for a miracle,” being “a fighter”—often do harm. In clinical training, none of us wanted to unleash the fury of modern medicine upon a 98-year-old with cancer who’d just lost his pulse, but we all inflicted some version of it: ramming his purpled breastbone against his stilled heart, sending electricity jagging through his chest, and breaching his throat, blood vessels, and penis with tubes, only to watch him die days later. I didn’t want that for my mom; I had no desire for her to cling futilely to life.

    And yet, even though it shamed me, I couldn’t deny feeling unnerved by my mom’s choice. I understood why she’d made it, but I still ruminated over alternate scenarios in which she gave chemo a shot or tried out home hospice. Though her certainty was comforting, I was also devastated about losing her, and uneasy about how soon after a new diagnosis she might die.

    My mom had made her end-of-life wishes known by the time I was in fifth grade. Our rental home still held the owners’ books, among them Final Exit, a 1991 guide for dying people to end their lives. The author dispensed step-by-step advice on how to carry out your own death, at a time when nothing like the Death With Dignity Act existed in any state. When I found the book, my mom snatched it away. But months later, after her best friend died of brain cancer, she asked if I remembered it.

    “If I ever get really sick, Lil,” she said, “I don’t plan to suffer for a long time just to die in the end anyhow. I would take my life before it gets to that point, like in that book. Just so you know.”

    After her Parkinson’s diagnosis, my mom moved across the country to Washington, mostly to be near my sister, but also because in 2008, it became only the second state to approve lethal prescriptions for the terminally ill. Since then, despite much contention, the District of Columbia and eight more states have followed—including California, where I live and practice medicine. No dying patient of mine had ever requested the drugs, so I didn’t think much about the laws. Then my mom got cancer, and suddenly, the controversies ceased to be abstract.

    Proponents of aid-in-dying laws tend to say that helping very sick patients die when they want to is compassionate and justified, because people of sound mind should be free to decide when their illnesses have become unbearable. Access to lethal medications (which many recipients never end up using) lets them concentrate on their remaining life. I sympathize: I’ve seen patients who, despite palliative care, suffered irremediable existential or physical pain that they could escape only with sedating doses of narcotics.

    But I grasped the other side of the argument as well: that self-determination has limits. Aid-in-dying opponents have said that doctors who hasten death violate the Hippocratic Oath. Although I disagree with these moral objections, I do share some of the antagonists’ policy concerns. Many worry that state laws will expand to encompass children and the mentally ill, as they do in countries such as Belgium and the Netherlands. They argue that a nation that still devalues disabled people needs to invest in care, rather than permit death and open up the risk of coercion. So far, Americans who have used these laws have been overwhelmingly white and college-educated. But I could imagine patients of mine requesting death for suffering that’s been amplified by their poverty or uninsurance.

    These policies are so polarizing that people can’t even agree on language. Detractors refer to “assisted suicide,” or even murder, while supporters prefer medical “aid-in-dying,” which I’ll use, because it’s less charged. But I don’t much like either term, and neither did my mom. She was already dying, so she didn’t think of her death as suicide. Nor would she accept a passive term such as aid-in-dying, when she was the one taking action. Lacking any suitable word, she settled on a phrase that felt stark but honest. “When I kill myself,” she’d say. When she killed herself, we should give her spice rack to a friend. When she killed herself, we shouldn’t hold a funeral, because that would be depressing. Her tone was always matter-of-fact. My stomach always somersaulted.

    That summer, I read constantly about aid-in-dying—accounts of its use in Switzerland, essays in American medical journals, articles written by people who’d lost a loved one that way. I was the exception in our family. My mom was concerned with bigger issues, like whether the ice-cream shop would restock the lemon flavor before she died. My sister thought I was overintellectualizing things—and she was right. Sometimes we do the only thing we know how to, to keep from falling apart.

    So I kept looking for the solace of stories that felt as complicated as my own thoughts. They were remarkably rare. To me, loving my mom meant acknowledging my own hesitation yet still respecting her measure of the unendurable. Juggling these emotions felt nuanced, but most of what I read didn’t. So many narratives cast aid-in-dying as either an abomination or the epitome of virtue, in which a dying person could be rewarded for courageous serenity with a perfect death.

    Another daughter whose mother pursued aid-in-dying spoke in a TED Talk of the “design challenge” to “rebrand” death as “honest, noble, and brave.” But however tantalizing the prospect, the promise that we can scrub death of ugliness felt dangerously dishonest. Death can be wrenching and awful no matter where and how it happens: on a ventilator in an intensive-care unit, on morphine in hospice, or with a lethal prescription at home, surrounded by family. Being able to control death doesn’t mean we can perfect it.

    The myth of the “good death”—graceful and unsullied, beatific even—has infiltrated the human subconscious since at least the 15th century, when the Ars Moriendi, Christian treatises on the art of dying, proliferated in Europe. A translation of one version counsels the sick on how to die “gladly.” The moral in these texts bludgeons you: How you die is a referendum on how you lived, with only a picturesque exit guaranteeing repose for the soul.

    The notion has seeped through generations. “I hope if I’m ever in that situation, I’d have the bravery to do that,” one friend said about my mom’s choice. “It’s good she’ll die with her dignity intact,” said another. My mom’s physicians, kind and smart people, seemed so eager to validate her decision that the aid-in-dying criteria distilled to a checklist rather than unfurling into conversation. Even the name of the law my mom intended to use, Death With Dignity, implies that planned death succeeds where other ways of dying don’t. More than half a millennium after the Ars Moriendi, we still seem to believe that you can fail at death itself.

    One doctor told us of a landscape architect who drank the fatal cocktail while exulting in her garden in full bloom. It sounded perfect—except that in all my years as a doctor, I’ve never seen a perfect death. Every time, there’s some flaw: physical discomfort, conversations left unfinished, terror, family conflict, a loved one who didn’t get there in time. Still, my sister and I tried to stage-manage a beautiful death. We booked a cabin in Olympic National Park for my mom’s exit. We would bake her famous olive bread and cook bouillabaisse. We’d wheel her to the beach, then to the towering cedar forest, then massage her feet with almond oil while we talked in front of a woodstove. The fireside conversation would be our parting exchange of gifts, full of meaning, remembrance, and closure.

    As our family waited for that day to come, we kept thinking we should be tearing through a bucket list. Instead, we did what we always had—cooked, played games, read. We just did it with an ever-present sense of countdown, in an apartment where nearly everything would outlive my mom: the succulent on the windowsill, the lasagna in the freezer she made us promise to eat when she was gone.

    My mom did have the lemon ice cream again, but our family never made it to the cabin in the forest. A month before the planned trip—10 weeks after my mom’s diagnosis—the pharmacy compounded the drugs: a mixture of morphine and three others. The bottle was amber, filled with dissolvable powder and labeled with the words No Refills. (“Now that would be a dark Saturday Night Live skit,” my mom told me.) The next morning, a Thursday, she called, dizzy and miserable. She wanted to die ahead of schedule, on Saturday. I got on a plane.

    My mom, my sister’s family, and I spent Friday grilling chicken and drinking good wine. After my older niece painted my mom’s nails lavender with polka dots, the kids and my brother-in-law said their goodbyes and left. The next morning, my sister and I laid out the backyard like a set: a couch swathed in blankets. Tables with plants and photos and huge candlesticks. A stereo to play the music of our childhood and her motherhood.

    But our revised choreography couldn’t erase how horrible my mom felt that morning, dispirited by her disease and deeply exhausted. We had to cajole her not to die in bed. Eventually, she came outside, where we drank peppermint tea and talked about nothing memorable. When the moment came to gulp the bottle’s contents, mixed into lemonade, she didn’t hesitate.

    “You would make the same choice if you were me, right?” she said, setting down the empty bottle. I knew she wasn’t second-guessing. She was ending her time as our mother not out of lack of devotion, but because all other options felt untenable, and she needed confirmation that we knew this.

    “Yes,” my sister said, “I would.”

    “Me too,” I said—but in truth, I didn’t know. Maybe I would have dwindled over months of chemo as I learned to reshape my life in the face of imminent death. Maybe I would have died in hospice, surrendering myself to the fog and mercy of morphine. Maybe I would have stowed the drugs in a cupboard, cradling them occasionally and then, unable to reconcile the simplicity and complexity of that ending, replacing them. Each of these paths would have demanded its own form of courage—just not my mom’s type.

    “I’ll just go to sleep now, right?” she asked.

    “Yeah, Mom, you’ll just go to sleep,” I said. “I love you.”

    My sister and I kissed her forehead, her cheeks, her collarbone. We avoided the poisonous sheen on her lips, where our tears had wet the residue of white powder.

    The aspens rustled, confetti of silver. My mom didn’t cry, and the slightest trace of a smile alighted on her face.

    “Bye,” she said. “You’ve been awesome.”

    And then she dove off the dock. Her lips blued, and when she tried to speak more, the words never surfaced.

    It took her five and a half hours to disappear completely, while my sister and I tamped down growing worries that the drugs hadn’t worked. My mom felt no pain—she couldn’t have, after all that morphine—but her passing wasn’t a fairy tale. Her suffering wasn’t embossed in meaning; she didn’t tile over her bitterness with saintly forbearance. My mom died on the day she was ready and by the means she chose. All of that matters, immensely so. She also died precipitously, far from the forest she’d dreamed of, while my sister and I were left with little closure and a prolonged, confusing death.

    Usually, I write when I’m most upset, but my mom’s death catapulted me into a frightening depth of wordlessness. Weeks passed before I realized that my problem was not that I couldn’t find words at all. It was that I couldn’t tell the tale I felt I was supposed to. In that myth, death has a metric of success, and that metric is beauty. The trouble is that you can’t grieve over a version of events that never happened. You can only grieve over the story you lived, with all of its ambiguities.

    My mom’s death was beautiful. It was also terrible, and fraught. That is to say, it was human.

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    Lindsay Ryan

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  • The Big COVID Question for Hospitals This Fall

    The Big COVID Question for Hospitals This Fall

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    Back in the spring, around the end of the COVID-19 public-health emergency, hospitals around the country underwent a change in dress code. The masks that staff had been wearing at work for more than three years vanished, in some places overnight. At UChicago Medicine, where masking policies softened at the end of May, Emily Landon, the executive medical director of infection prevention and control, fielded hate mail from colleagues, some chiding her for waiting too long to lift the requirement, others accusing her of imperiling the immunocompromised. At Vanderbilt University Medical Center, which did away with masking in April, ahead of many institutions, Tom Talbot, the chief hospital epidemiologist, was inundated with thank-yous. “People were ready; they were tired,” he told me. “They’d been asking for several months before that, ‘Can we not stop?’”

    But across hospitals and policies, infection-prevention experts shared one sentiment: They felt almost certain that the masks would need to return, likely by the end of the calendar year. The big question was exactly when.

    For some hospitals, the answer is now. In recent weeks, as COVID-19 hospitalizations have been rising nationwide, stricter masking requirements have returned to a smattering of hospitals in Massachusetts, California, and New York. But what’s happening around the country is hardly uniform. The coming respiratory-virus season will be the country’s first after the end of the public-health emergency—its first, since the arrival of COVID, without crisis-caliber funding set aside, routine tracking of community spread, and health-care precautions already in place. After years of fighting COVID in concert, hospitals are back to going it alone.

    A return to masking has a clear logic in hospitals. Sick patients come into close contact; medical procedures produce aerosols. “It’s a perfect storm for potential transmission of microbes,” Costi David Sifri, the director of hospital epidemiology at UVA Health, told me. Hospitals are on the front lines of disease response: They, more than nearly any other place, must prioritize protecting society’s vulnerable. And with one more deadly respiratory virus now in winter’s repertoire, precautions should logically increase in lockstep. But “there is no clear answer on how to do this right,” says Cameron Wolfe, an infectious-disease physician at Duke. Americans have already staked out their stances on masks, and now hospitals have to operate within those confines.


    When hospitals moved away from masking this spring, they each did so at their own pace—and settled on very different baselines. Like many other hospitals in Massachusetts, Brigham and Women’s Hospital dropped its mask mandate on May 12, the day the public-health emergency expired; “it was a noticeable difference, just walking around the hospital” that day, Meghan Baker, a hospital epidemiologist for both Brigham and Women’s Hospital and Dana-Farber Cancer Institute, told me. UVA Health, meanwhile, weaned staff off of universal masking over the course of about 10 weeks.

    Most masks at the Brigham are now donned on only a case-by-case basis: when a patient has active respiratory symptoms, say, or when a health-care worker has been recently sick or exposed to the coronavirus. Staff also still mask around the same subset of vulnerable patients that received extra protection before the pandemic, including bone-marrow-transplant patients and others who are highly immunocompromised, says Chanu Rhee, an associate hospital epidemiologist at Brigham and Women’s Hospital. UVA Health, meanwhile, is requiring masks for everyone in the hospital’s highest-risk areas—among them, certain intensive-care units, as well as cancer, transplant, and infusion wards. And although Brigham patients can always request that their providers mask, at UVA, all patients are asked upon admission whether they’d like hospital staff to mask.

    Nearly every expert I spoke with told me they expected that masks would at some point come back. But unlike the early days of the pandemic, “there is basically no guidance from the top now,” Saskia Popescu, an epidemiologist and infection-prevention expert at the University of Maryland School of Medicine, said. The CDC still has a webpage with advice on when to mask. Those recommendations are tailored to the general public, though—and don’t advise covering up until COVID hospital admissions go “way high, when the horse has well and truly left the barn,” Landon, at UChicago, told me. “In health care, we need to do something before that”—tamping down transmission prior to wards filling up.

    More specific advice could still emerge from the CDC, or individual state health departments. But going forward, the assumption is that “each hospital is supposed to have its own general plan,” Rhee told me. (I reached out to the CDC repeatedly about whether it might update its infection-prevention-guidance webpage for COVID—last retooled in May—but didn’t receive a response.)

    Which leaves hospitals with one of two possible paths. They could schedule a start to masking season, based on when they estimate cases might rise—or they could react to data as they come in, tying masking policies to transmission bumps. With SARS-CoV-2 still so unpredictable, many hospitals are opting for the latter. That also means defining a true case rise—“what I think everybody is struggling with right now,” Rhee said. There is no universal definition, still, for what constitutes a surge. And with more immunity layered over the population, fewer infections are resulting in severe disease and death—even, to a limited extent, long COVID—making numbers that might have triggered mitigations just a year or two ago now less urgent catalysts.

    Further clouding the forecast is the fact that much of the data that experts once relied on to monitor COVID in the community have faded away. In most parts of the country, COVID cases are no longer regularly tallied; people are either not testing, or testing only at home. Wastewater surveillance and systems that track all influenza-like illnesses could provide some support. But that’s not a whole lot to go on, especially in parts of the country such as Tennessee, where sewage isn’t as closely tracked, Tom Talbot, of Vanderbilt, told me.

    Some hospitals have turned instead to in-house stats. At Duke—which has adopted a mitigation policy that’s very similar to UVA’s—Wolfe has mulled pulling the more-masking lever when respiratory viruses account for 2 to 4 percent of emergency and urgent-care visits; at UVA, Sifri has considered taking action once 1 or 2 percent of employees call out sick, with the aim of staunching sickness and preserving staff. “It really doesn’t take much to have an impact on our ability to maintain operations,” Sifri told me. But “I don’t know if those are the right numbers.” Plus, internal metrics are now tricky for the same reasons they’ve gotten shaky elsewhere, says Xiaoyan Song, the chief infection-control officer at Children’s National Hospital, in Washington, D.C. Screening is no longer routine for patients, skewing positivity stats; even sniffly health-care workers, several experts told me, are now less eager to test and report.

    For hospitals that have maintained a more masky baseline, scenarios in which universal masking returns are a little easier to envision and enact. At UChicago Medicine, Landon and her colleagues have developed a color-coded system that begins at teal—masking for high-risk patients, patients who request masked care, and anyone with symptoms, plus masking in high-risk areas—and goes through everyone-mask-up-everywhere red; their team plans to meet weekly to assess the situation, based on a variety of community and internal metrics, and march their masking up or down. Wolfe, of Duke, told me that his hospital “wanted to reserve a little bit of extra masking quite intentionally,” so that any shift back toward stricter standards would feel like less of a shock: Habits are hard to break and then reform.

    Other hospitals that have been living mostly maskless for months, though, have a longer road back to universal masking, and staff members who might not be game for the trek. Should masks need to return at the Brigham or Dana-Farber, for instance, “I suspect the reaction will be mixed,” Baker told me. “So we really are trying to be judicious.” The hospital might try to preserve some maskless zones in offices and waiting rooms, for instance, or lower-risk rooms. And at Children’s National, which has also largely done away with masks, Song plans to follow the local health department’s lead. “Once D.C. Health requires hospitals to reimplement the universal-masking policy,” she told me, “we will be implementing it too.”

    Other mitigations are on the table. Several hospital epidemiologists told me they expected to reimplement some degree of asymptomatic screening for various viruses around the same time they reinstate masks. But measures such as visiting restrictions are a tougher call. Wolfe is reluctant to pull that lever before he absolutely has to: Going through a hospital stay alone is one of the “harder things for patients to endure.”


    A bespoke approach to hospital masking isn’t impractical. COVID waves won’t happen synchronously across communities, and so perhaps neither should policies. But hospitals that lack the resources to keep tabs on viral spread will likely be at a disadvantage, and Popescu told me she worries that “we’re going to see significant transmission” in the very institutions least equipped to handle such influx. Even the best-resourced places may hit stumbling blocks: Many are still reeling from three-plus years of crisis and are dealing with nursing shortages and worker burnout.

    Coordination hasn’t entirely gone away. In North Carolina, Duke is working with the University of North Carolina at Chapel Hill and North Carolina State University to shift policies in tandem; in Washington State, several regional health-care organizations have pledged to align their masking policies. And the Veterans Health Administration—where masking remains required in high-risk units—has developed a playbook for augmenting mitigations across its many facilities, which together make up the country’s largest integrated health-care system, says Shereef Elnahal, the undersecretary of Veterans Affairs for health. Still, institutions can struggle to move in sync: Attitudes on masking aren’t exactly universal across health-care providers, even within a hospital.

    The country’s experience with COVID has made hospitals that much more attuned to the impacts of infectious disease. Before the pandemic began, Talbot said, masking was a rarity in his hospital, even around high-risk patients; many employees would go on shifts sick. “We were pretty complacent about influenza,” he told me. “People could come to work and spread it.” Now hospital workers hold themselves to a stricter standard. At the same time, they have become intimately attuned to the drawbacks of constant masking: Some have complained that masks interfere with communication, especially for patients who are young or hard of hearing, or who have a language barrier. “I do think you lose a little bit of that personal bonding,” Talbot said. And prior to the lifting of universal masking at Vanderbilt, he said, some staff were telling him that one out of 10 times they’d ask a patient or family to mask, the exchange would “get antagonistic.”

    When lifting mandates, many of the hospital epidemiologists I spoke with were careful to message to colleagues that the situation was fluid: “We’re suspending universal masking temporarily,” as Landon put it to her colleagues. Still, she admits that she felt uncomfortable returning to a low-mask norm at all. (When she informally polled nearly two dozen other hospital epidemiologists around the country in the spring, most of them told her that they felt the same.) Health-care settings aren’t meant to look like the rest of the world; they are places where precautions are expected to go above and beyond. COVID’s arrival had cemented masks’ ability to stop respiratory spread in close quarters; removing them felt to Landon like pushing those data aside, and putting the onus on patients—particularly those already less likely to advocate for themselves—to account for their own protection.

    She can still imagine a United States in which a pandemic-era response solidified, as it has in several other countries, into a peacetime norm: where wearing masks would have remained as routine as donning gloves while drawing blood, a tangible symbol of pandemic lessons learned. Instead, many American hospitals will be entering their fourth COVID winter looking a lot like they did in early 2020—when the virus surprised us, when our defenses were down.

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    Katherine J. Wu

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