Anita Freeman, left, hugs her sister Elizabeth Martin at a bakery in Huntington Beach, California, in 2009 — a year before Elizabeth's cancer diagnosis. (Courtesy Anita Freeman)
For five weeks, Anita Freeman watched her sister writhe in pain. The colon cancer diagnosed four years earlier became metastatic.
"I still wouldn't wish that ending on my worst enemy."
At this tormenting juncture, her 66-year-old sister, Elizabeth Martin, wanted to die comfortably in her sleep. But doctors wouldn't help fulfill that final wish.
"It haunts me," Freeman, 74, who lives in Long Beach, California, says in recalling the prolonged agony. Her sister "was breaking out of the house and running in her pajamas down the sidewalk, screaming, 'Help me. Help me.' She just went into a total panic."
Finally, a post-acute care center offered pentobarbital, a sedative that induced a state of unconsciousness, but only after an empathetic palliative care doctor called and insisted on ending the inhumane suffering. "We even had to fight the owners of the facility to get them to agree to the recommendations," Freeman says, describing it as "the only option we had at that time; I still wouldn't wish that ending on my worst enemy."
Her sister died a week later, in 2014. That was two years before California's medical aid-in-dying law took effect, making doctors less reliant on palliative sedation to peacefully end unbearable suffering for terminally ill patients. Now, Freeman volunteers for Compassion & Choices, a national grassroots organization based in Portland, Oregon, that advocates for expanding end-of-life options.
Palliative sedation involves medicating a terminally ill patient into lowered awareness or unconsciousness in order to relieve otherwise intractable suffering at the end of life. It is not intended to cause death, which occurs due to the patient's underlying disease.
In contrast, euthanasia involves directly and deliberately ending a patient's life. Euthanasia is legal only in Canada and some European countries and requires a health care professional to administer the medication. In the United States, laws in seven states and Washington, D.C. give terminally ill patients the option to obtain prescription medication they can take to die peacefully in their sleep, but they must be able to self-adminster it.
Recently, palliative sedation has been gaining more acceptance among medical professionals as an occasional means to relieve suffering, even if it may advance the time of death, as some clinicians believe. However, studies have found no evidence of this claim. Many doctors and bioethicists emphasize that intent is what distinguishes palliative sedation from euthanasia. Others disagree. It's common for controversy to swirl around when and how to apply this practice.
Elizabeth Martin with her sister Anita Freeman in happier times, before metastatic cancer caused her tremendous suffering at the end of her life.
(Courtesy Anita Freeman)
"Intent is everything in ethics. The rigor and protocols we have around palliative sedation therapy also speaks to it being an intervention directed to ease refractory distress," says Martha Twaddle, medical director of palliative medicine and supportive care at Northwestern University's Lake Forest Hospital in Lake Forest, Illinois.
Palliative sedation should be considered only when pain, shortness of breath, and other unbearable symptoms don't respond to conventional treatments. Left to his or her own devices, a patient in this predicament could become restless, Twaddle says, noting that "agitated delirium is a horrible symptom for a family to witness."
At other times, "we don't want to be too quick to sedate," particularly in cases of purely "existential distress"—when a patient experiences anticipatory grief around "saying goodbye" to loved ones, she explains. "We want to be sure we're applying the right therapy for the problem."
Encouraging patients to reconcile with their kin may help them find inner peace. Nonmedical interventions worth exploring include quieting the environment and adjusting lighting to simulate day and night, Twaddle says.
Music-thanatology also can have a calming effect. It is live, prescriptive music, mainly employing the harp or voice, tailored to the patient's physiological needs by tuning into vital signs such as heart rate, respiration, and temperature, according to the Music-Thanatology Association International.
"When we integrated this therapeutic modality in 2003, our need for using palliative sedation therapy dropped 75 percent and has remained low ever since," Twaddle observes. "We have this as part of our care for treating refractory symptoms."
"If palliative sedation is being employed properly with the right patient, it should not hasten death."
Ethical concerns surrounding euthanasia often revolve around the term "terminal sedation," which "can entail a physician deciding that the patient is a lost cause—incurable medically and in substantial pain that cannot adequately be relieved," says John Kilner, professor and director of the bioethics programs at Trinity International University in Deerfield, Illinois.
By halting sedation at reasonable intervals, the care team can determine whether significant untreatable pain persists. Periodic discontinuation serves as "evidence that the physician is still working to restore the patient rather than merely to usher the patient painlessly into death," Kilner explains. "Indeed, sometimes after a period of unconsciousness, with the body relieved of unceasing pain, the body can recover enough to make the pain treatable."
The medications for palliative sedation "are tried and true sedatives that we've had for a long time, for many years, so they're predictable," says Joe Rotella, chief medical officer at the American Academy of Hospice and Palliative Medicine.
Some patients prefer to keep their eyes open and remain conscious to answer by name, while others tell their doctors in advance that they want to be more heavily sedated while receiving medications to manage pain and other symptoms. "We adjust the dosage until the patient is sleeping at a desired level of sedation," Rotella says.
Sedation is an intrinsic side effect of most medications prescribed to control severe symptoms in terminally ill patients. In general, most people die in a sleepy state, except for instances of sudden, dramatic death resulting from a major heart attack or stroke, says Ryan R. Nash, a palliative medicine physician and director of The Ohio State University Center for Bioethics in Columbus.
"Using those medications to treat pain or shortness of breath is not palliative sedation," Nash says. In addition, providing supplemental nutrition and hydration in situations where death is imminent—with a prognosis limited to hours or days—generally doesn't help prolong life. "If palliative sedation is being employed properly with the right patient," he adds, "it should not hasten death."
Nonetheless, hospice nurses sometimes feel morally distressed over carrying out palliative sedation. Implementing protocols at health systems would help guide them and alleviate some of their concerns, says Gregg VandeKieft, medical director for palliative care at Providence St. Joseph Health's Southwest Washington Region in Olympia, Washington. "It creates guardrails by sort of standardizing and normalizing things," he says.
"Our goal is to restore our patient. It's never to take their life."
The concept of proportionality weighs heavily in the process of palliative sedation. But sometimes substantial doses are necessary. For instance, an opioid-tolerant patient recently needed an unusually large amount of medication to control symptoms. She was in a state of illness-induced confusion and pain, says David E. Smith, a palliative medicine physician at Baptist Health Supportive Care in Little Rock, Arkansas.
Still, "we are parsimonious in what we do. We only use as much therapeutic force as necessary to achieve our goals," Smith says. "Our goal is to restore our patient. It's never to take their life."
Recent immigration restrictions have left many foreign researchers' projects and careers in limbo—and some in jeopardy.
"I spent about $4,000 on lawyer fees and another $1,200 to pay for the motions I filed," she recalls. "I had to borrow money from my parents and my cousin because without my salary I just didn't have the $7,000 at hand." But the already narrow window of opportunity slammed completely shut when the Trump administration suspended issuing new visas for foreign researchers in June. All Mohan's attempts were denied. In August, she had to leave the country. "Given the recent work visa ban by the administration, all my options in the U.S. are closed," she wrote a bitter note on Twitter. "I have to uproot my entire life in NY for the past 6 years and leave." She eventually found a temporary position in Calcutta, where she can continue research.
Mohan is hardly alone in her visa saga. Many foreign scholars on H- and J-type visas and other permits that let them remain employed in America had been struggling to keep their rights to continue research, which in certain cases is crucial to battling the pandemic. Some had to leave the country, some filed every possible extension to buy time, and others are stuck in their home countries, unable to return. The already cumbersome process of applying for visas and extensions became crippled during the lockdowns. But in June, when President Trump extended and expanded immigration restrictions to cut the number of immigrant workers entering the U.S., the new limits left researchers' projects and careers in limbo—and some in jeopardy.
"We have been a beneficiary of this flow of human capacity and resource investment for many generations—and this is now threatened."
Rakesh Ramachandran, whose computational biology work contributed to one of the first coronavirus studies to map out its protein structures—is stranded in India. In early March, he had travelled there to attend a conference and visit the American consulate to stamp his H1 visa for a renewal, already granted. The pandemic shut down both the conference and the consulates, and Ramachandran hasn't been able to come back since. The consulates finally opened in September, but so far the online portal has no available appointment slots. "I'm told to keep trying," Ramachandran says.
The visa restrictions affected researchers worldwide, regardless of disciplines or countries. A Ph.D. student in neuroscience, Morgane Leroux had to do her experiments with mice at Gladstone Institutes in America and analyze the data back home at Sorbonne University in France. She had finished her first round of experiments when the lockdowns forced her to return to Paris, and she hasn't been able to come back to resume her work since. "I can't continue the experiments, which is really frustrating," she says, especially because she doesn't know what it means for her Ph.D. "I may have to entirely change my subject," she says, which she doesn't want to do—it would be a waste of time and money.
But besides wreaking havoc in scholars' personal lives and careers, the visa restrictions had—and will continue to have—tremendous deleterious effects on America's research and its global scientific competitiveness. "It's incredibly short-sighted and self-destructing to restrict the immigration of scientists into the U.S.," says Benjamin G. Neel, who directs the Laura and Isaac Perlmutter Cancer Center at New York University. "If they can't come here, they will go elsewhere," he says, causing a brain drain.
Neel in his lab with postdocs
(Courtesy of Neel)
Neel felt the outcomes of the shortsighted policies firsthand. In the past few months, his lab lost two postdoctoral researchers who had made major strides in understanding the biology of several particularly stubborn, treatment-resistant malignancies. One postdoc studied the underlying mechanisms responsible for 90 percent of pancreatic cancers and half of the colon ones. The other one devised a new system of modeling ovarian cancer in mice to test new therapeutic drug combinations for the deadliest tumor types—but had to return home to China.
"By working around the clock, she was able to get her paper accepted, but she hasn't been able to train us to use this new system, which can set us back six months," Neel says.
Her discoveries also helped the lab secure about $900,000 in grants for new research. Losing people like this is "literally killing the goose that lays the golden eggs," Neel adds. "If you want to make America poor again, this is the way to do it."
Cassidy R. Sugimoto at Indiana University Bloomington, who studies how scientific knowledge is produced and disseminated, says that scientists are the most productive when they are free to move, exchange ideas, and work at labs with the best equipment. Restricting that freedom reduces their achievement.
"Several empirical studied demonstrated the benefits to the U.S. by attracting and retaining foreign scientists. The disproportional number of our Nobel Prize winners were not only foreign-born but also foreign-educated," she says. Scientific advancement bolsters the country's economic prowess, too, so turning scholars away is bad for the economy long-term. "We have been a beneficiary of this flow of human capacity and resource investment for many generations—and this is now threatened," Sugimoto adds—because scientists will look elsewhere. "We are seeing them shifting to other countries that are more hospitable, both ideologically and in terms of health security. Many visiting scholars, postdocs, and graduate students who would otherwise come to the United States are now moving to Canada."
It's not only the Ph.D. students and postdocs who are affected. In some cases, even well-established professors who have already made their marks in the field and direct their own labs at prestigious research institutions may have to pack up and leave the country in the next few months. One scientist who directs a prominent neuroscience lab is betting on his visa renewal and a green card application, but if that's denied, the entire lab may be in jeopardy, as many grants hinge on his ability to stay employed in America.
"It's devastating to even think that it can happen," he says—after years of efforts invested. "I can't even comprehend how it would feel. It would be terrifying and really sad." (He asked to withhold his name for fear that it may adversely affect his applications.) Another scientist who originally shared her story for this article, later changed her mind and withdrew, worrying that speaking out may hurt the entire project, a high-profile COVID-19 effort. It's not how things should work in a democratic country, scientists admit, but that's the reality.
Still, some foreign scholars are speaking up. Mehmet Doğan, a physicist at University of California Berkeley who has been fighting a visa extension battle all year, says it's important to push back in an organized fashion with petitions and engage legislators. "This administration was very creative in finding subtle and not so subtle ways to make our lives more difficult," Doğan says. He adds that the newest rules, proposed by the Department of Homeland Security on September 24, could further limit the time scholars can stay, forcing them into continuous extension battles. That's why the upcoming election might be a turning point for foreign academics. "This election will decide if many of us will see the U.S. as the place to stay and work or whether we look at other countries," Doğan says, echoing the worries of Neel, Sugimoto, and others in academia.
Dogan on Zoom talking to his fellow union members of the Academic Researchers United, a union of almost 5,000 Academic Researchers.
(Credit: Ceyda Durmaz Dogan)
If this year has shown us anything, it is that viruses and pandemics know no borders as they sweep across the globe. Likewise, science can't be restrained by borders either. "Science is an international endeavor," says Neel—and right now humankind now needs unified scientific research more than ever, unhindered by immigration hurdles and visa wars. Humanity's wellbeing in America and beyond depends on it.
[Editor's Note: To read other articles in this special magazine issue, visit the beautifully designed e-reader version.]