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."
Some argue that transgender females should be banned from competing with women in sports, while others think such bans are unfair, as the NCAA and other organizations try to keep up with research on how testosterone affects performance.
However, in 18 states, many of which are politically conservative, laws prohibit transgender students from participating in sports consistent with their gender identity, according to the Movement Advancement Project, an independent, nonprofit think tank based in Boulder, Colo., that focuses on the rights of LGBTQ people. The first ban was passed in Idaho in 2020, although federal district judges have halted this legislation and a similar law in West Virginia from taking effect.
Proponents of the bans caution that transgender females would have an unfair biological advantage in competitive school sports with other girls or women as a result of being born as stronger males, potentially usurping the athletic accomplishments of other athletes.
“The future of women’s sports is at risk, and the equal rights of female athletes is being infringed,” said Penny Nance, CEO and president of Concerned Women for America, a legislative action committee in D.C. that seeks to impact culture to promote religious values.
“As the tidal wave of gender activism consumes sports from the Olympics on down, a backlash is being felt as parents are furious about the disregard for their daughters who have worked very hard to achieve success as athletes,” Nance added. “Former athletes, whose records are being shattered, are demanding answers.”
Meanwhile, opponents of the bans contend that they bar transgender athletes from playing sports with friends and learning the value of teamwork and other life lessons. These laws target transgender girls most often in kindergarten through high school but sometimes in college as well. Many local schools and state athletic associations already have their own guidelines “to both protect transgender people and ensure a level playing field for all athletes,” according to the Movement Advancement Project’s website. But statewide bans take precedence over these policies.
"It’s easy to sympathize on some level with arguments on both sides, and it’s likely going to be impossible to make everyone happy,” said Liz Joy, a past president of the American College of Sports Medicine.
In January, the National Collegiate Athletic Association (NCAA), based in Indianapolis, tried to sort out the controversy by implementing a new policy. It requires transgender students participating in female sports to prove that they’ve been taking treatments to suppress testosterone for at least one year before competition, as well as demonstrating that their testosterone level is sufficiently low, depending on the sport, through a blood test.
Then, in August, the NCAA clarified that these athletes also must take another blood test six months after their season has started that shows their testosterone levels aren’t too high. Additional guidelines will take effect next August.
Even with these requirements, “there is no plan that is going to be considered equitable and fair to all,” said Bradley Anawalt, an endocrinologist at the University of Washington School of Medicine. Biologically, he noted, there is still some evidence that a transgender female who initiates hormone therapy with estrogen and drops her testosterone to very low levels may have some advantage over other females, based on characteristics such as hand and foot size, height and perhaps strength.
Liz Joy, a past president of the American College of Sports Medicine, agrees that allowing transgender athletes to compete on teams of their self-identifying gender poses challenges. “It’s easy to sympathize on some level with arguments on both sides, and it’s likely going to be impossible to make everyone happy,” said Joy, a physician and senior medical director of wellness and nutrition at Intermountain Healthcare in Salt Lake City, Utah. While advocating for inclusion, she added that “sport was incredibly important in my life. I just want everyone to be able to benefit from it.”
One solution may be to allow transgender youth to play sports in a way that aligns with their gender identity until a certain age and before an elite level. “There are minimal or no potential financial stakes for most youth sports before age 13 or 14, and you do not have a lot of separation in athlete performance between most boys and girls until about age 13,” said Anwalt, who was a reviewer of the Endocrine Society’s national guidelines on transgender care.
Myron Genel, a professor emeritus and former chief of pediatric endocrinology at Yale School of Medicine, said it’s difficult to argue that height gives transgender females an edge because in some sports tall women already dominate over their shorter counterparts.
He added that the decision to allow transgender females to compete with other girls or women could hinge on when athletes began taking testosterone blockers. “If the process of conversion from male to female has been undertaken in the early stages of puberty, from my perspective, they have very little unique advantage,” said Genel, who advised the International Olympic Committee (IOC), based in Switzerland, on testosterone limits for transgender athletes.
Because young athletes’ bodies are still developing, “the differences in natural abilities are so massive that they would overwhelm any advantage a transgender athlete might have,” said Thomas H. Murray, president emeritus of The Hastings Center, a pioneering bioethics research institute in Garrison, New York, and author of the book “Good Sport,” which focuses on the ethics and values in the Olympics and other competitions.
“There’s no good reason to limit the participation of transgender athletes in the sports where male athletes don’t have an advantage over women,” such as sailing, archery and shooting events, Murray said. “The burden of proof rests on those who want to restrict participation by transgender athletes. They must show that in this sport, at this level of competition, transgender athletes have a conspicuous advantage.”
Last year, the IOC issued a new framework emphasizing that the Olympic rules related to transgender participation should be specific to each sport. “This is an evolving topic and there has been—as it will continue to be—new research coming out and new developments informing our approach,” and there’s currently no consensus on how testosterone affects performance across all sports, an IOC spokesperson told Leaps.org.
Many of the new laws prohibiting transgender people from competing in sports consistent with their gender identity specifically apply to transgender females. Yet, some experts say the issue also affects transgender males, nonbinary and intersex athletes.
“There has been quite a bit of attention paid to transgender females and their participation in biological female sports and almost minimal focus on transgender male competition in male sports or in any sports,” said Katherine Drabiak, associate professor of public health law and medical ethics at University of South Florida in Tampa. In fact, “transgender men, because they were born female, would be at a disadvantage of having less lean body mass, less strength and less muscular area as a general category compared to a biological male.”
While discussing transgender students’ participation in sports, it’s important to call attention to the toll that anti-transgender legislation can take on these young people’s well-being, said Jonah DeChants, a research scientist at The Trevor Project, a suicide prevention and mental health organization for LGBTQ youth. Recent polling found that 85 percent of transgender and nonbinary youth said that debates around anti-transgender laws had a negative impact on their mental health.
“The reality is simple: Most transgender girls want to play sports for the same reasons as any student—to benefit their health, to have fun, and to build connection with friends,” DeChants said. According to a new peer-reviewed qualitative study by researchers at The Trevor Project, many trans girls who participated in sports experienced harassment and stigma based on their gender identity, which can contribute to poor mental health outcomes and suicide risk.
In addition to badminton, O'Connor played other sports such as volleyball, and she plans to become an assistant coach or manager of her old high school's badminton team.
Ashley O'Connor
However, DeChants added, research also shows that young people who reported living in an accepting community, had access to LGBTQ-affirming spaces, or had social support from family and friends reported significantly lower rates of attempting suicide in the past year. “We urge coaches, educators and school administrators to seek LGBTQ-cultural competency training, implement zero tolerance policies for anti-trans bullying, and create safe, affirming environments for all transgender students on and off the field,” DeChants said.
O’Connor said her experiences on the athletic scene have been mostly positive. The politics of her community lean somewhat liberal, and she thinks it’s probably more supportive than some other areas of the country, though she noted the local library has received threats for hosting LGBTQ events. In addition to badminton, she also played baseball, lacrosse, volleyball, basketball and hockey. In the spring, she plans to become an assistant coach or manager for the girls’ badminton team at her old high school.
“When I played badminton, I never got any direct backlash from any coaches, competitors or teammates,” she said. “I had a few other teammates that identified as trans or nonbinary, [and] nearly all of the people I ever interacted with were super pleasant and treated me like any other normal person.” She added that transgender athletes “have aspirations. We have wants and needs. We have dreams. And at the end of the day, we just want to live our lives and be happy like everyone else.”
