'Busy Inside,' a New Documentary, Explores Dissociative Identity Disorder

The condition, formerly called multiple personality disorder, affects a surprising 1 percent of the population.Twenty-eight-year-old Marshay refers to herself as “the Little One” and says she feels as if she was born six years ago. Her mother knows something really bad must have happened to her when she was very young, although she doesn’t know what happened. When she asks her daughter why she thinks she’s still a small child, Marshay answers, “I don’t remember anything. I don’t want to grow up. I want to stay little.”Marshay’s brain periodically seeks a safe haven, a persona where she feels immune to some horrific abuse she apparently suffered early in life. She has other identities as well who “come out” when provoked by certain triggering events and she needs these alternate identities to feel safe.Marshay is one of several people with dissociative identity disorder who are featured in a new documentary called “Busy Inside,” available on public television’s World Channel: America ReFramed. It can be watched free online through April 15. She is among a surprising 1 percent of the population with this psychiatric condition, formerly called multiple personality disorder, which was famously portrayed decades ago in films like “The Three Faces of Eve” and “Sybil.” It mostly affects women.The new film shows the challenges involved in learning to live with the disorder. Still, most of those affected never seek professional help until and unless their lives become unmanageable.Karen Marshall, Marshay’s therapist, a licensed social worker, also has the disorder, and told me that 17 different personalities inhabit her psyche and can emerge from time to time. She suffered severe sexual and physical abuse as a young child at the hands of her mother, and said she experienced tremendous relief when she died “and couldn’t hurt me anymore.” She says her own trauma, and the ways she learned to manage it, has helped her be an effective therapist.Dr. David Spiegel, a Stanford University psychiatrist who gave the disorder its modern name, explained, “We develop our identity in childhood, and if you’re abused by someone who is supposed to love and protect you, you try to detach yourself from” that abusive situation. “In extreme forms, you assume other identities. It becomes a disorder.” The hippocampus, a part of the brain that deals with stress, may shrink and cause an extreme sensitivity to stress hormones, he said.Early in life when the brain can’t handle something, “it puts it in a little box in the brain,” Ms. Marshall said. Then something else it can’t handle goes into another compartment in the brain, and so forth, resulting in some people developing different personalities, any of which can take over for a time.A woman in the film named Sarah who has seven or eight identities describes her childhood trauma as being in a freezing cold basement with few clothes on and two men grabbing at her while others stood around laughing. “I can see this happening but I can’t stop it,” she recalls. “The monster keeps coming out, obliterating everything.”In the documentary, Ms. Marshall encourages Marshay to accept herself as an adult woman with many facets, saying reassuringly, “We all have different roles, and we all wear different masks in a way.”For those with the disorder, when an alternate identity takes over, the person may lose track of time and have no memory of what the other personality did while it was “out.” Ms. Marshall said one woman she treated had an alternate personality who was a shoplifter and when she reverted to her main identity, had no idea how she had acquired all the things in her apartment.Dissociative identity disorder is both underdiagnosed and often misdiagnosed as depression or anxiety disorder and consequently mistreated, Dr. Spiegel said. Once affected individuals acknowledge that they have a problem, it takes an average of six years for them to learn what is causing their symptoms if they should seek help, Dr. Spiegel said.Some people with the disorder never do, and somehow manage to live normal lives until and unless something very stressful causes their alternate identities to take over and disrupt their ability to function. For example, Ms. Marshall told me, one person in the film performed well as a company executive for many years until a family trauma so unnerved her that her identities split, very hostile and disabling personalities emerged and she could no longer do her job.Dr. Spiegel said some people with the disorder “are afraid of treatment or ambivalent about it; they don’t believe I’m here to help them because, based on their history, they see helpers as potentially harming them.”Alternate identities can also emerge at the same time, as if the person is two people who oppose one another. The identities develop specialized roles, coming out under certain circumstances, Dr. Spiegel said. For example, one identity may “protect” against another that might be aggressive or harmful. The protective identity may think, “I’m going to stay out while so-and-so is around,” he said. As Ms. Marshall explained, people can have one or two identities that act as gatekeepers, keeping the others inside.In treatment, by identifying and emphasizing the person’s core values and beliefs, the person’s adult identity that enables them to function normally can learn to take over for identities that are distressing or troublemakers, Ms. Marshall said.Her approach to treatment does not necessarily try to rid people of their alternate identities unless, of course, that’s what they want to accomplish. Rather, she said, they may learn to use their alternates constructively so they can live a normal life as an adult in society.Also helpful is learning to recognize circumstances that can prompt a distressing identity to emerge and temporarily replace the adult persona. Ms. Marshall said she has learned, “If I’m tired or sick or stressed, I can end up splitting,” and a childlike personality emerges.As in post-traumatic stress disorder, people with multiple identities can have flashbacks and experience their abuse all over again. Ms. Marshall said, “I don’t watch shows about child abuse.” In treating dissociative identity disorder, she said, “I try to get the ‘Little Ones,’ who were traumatized, to know they’re safe, that they’re not going to be hurt again.”Dr. Richard P. Kluft, a psychiatrist in Bala Cynwyd, Pa., focuses therapy for the disorder on providing “good, caring, nurturing, comforting support” that helps patients feel safe. “The mind starts to heal in the face of loving care,” he said. Both he and Dr. Spiegel often use hypnosis to facilitate therapy and teach patients how to calm themselves down with self-hypnosis between sessions.For patients reluctant to leave behind their “rich inner world,” Dr. Kluft says he welcomes all parts of their personality, helping their various identities learn to empathize with and respect one another.Ms. Marshall said that as people with multiple identities start to get healthier, “they can look at what they’re feeling and experiencing and then make a different choice. They can learn to use their alternates constructively so they can function in society as an adult person,” which Marshay is gradually learning to do.

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Menthol Cigarettes Kill Many Black People. A Ban May Finally Be Near.

Advocates are hoping that President Biden will soon come out in favor of banning mint-flavored cigarettes and other tobacco products.The banning of menthol cigarettes, the mint-flavored products that have been aggressively marketed to Black Americans, has long been an elusive goal for public health regulators.But Covid-19 and the Black Lives Matter movement have put new pressure on Congress and the White House to reduce racial health disparities. And there are few starker examples than this: Black smokers smoke less but die of heart attacks, strokes and other causes linked to tobacco use at higher rates than white smokers do, according to the Centers for Disease Control and Prevention. And 85 percent of Black smokers use Newport, Kool and other menthol brands that are easier to become addicted to and harder to quit than plain tobacco, according to the Food and Drug Administration.“Covid-19 exposed the discriminatory treatment that Black people have been facing for hundreds of years,” said Dr. Phillip Gardiner, a co-chairman of the African American Tobacco Control Leadership Council, which has been pushing for menthol bans in communities across the country. Calling menthol cigarettes and cigarillos “main vectors” of disease and death among Black Americans, he added, “It’s precisely at this time that we need strong public health measures.”There is now growing momentum in Congress to enact a ban. In states and municipalities across the country, Black public health activists have been organizing support and getting new laws passed at the state and local level. Public opposition among white parents to all flavored e-cigarettes, including menthol, has brought new resources to the issue. And the F.D.A. is under a court order to respond to a citizens’ petition to ban menthol by April 29.Advocates are hoping that President Biden, whose campaign had strong support from Black voters and who has put addressing health inequities front and center among his goals, will soon come out in favor of a ban.“I have no doubt that it’s time for a ban on menthol,” said Representative Karen Bass, of California, who led the Congressional Black Caucus during the last Congress. “We should never allow a chemical that is specifically targeted to a population, that increases death, no matter who it is. In this case, it’s menthol and the Black population. I’m so excited that we have an administration that puts racial equity and health disparities at top of its agenda.”Kevin Munoz, a spokesman for the White House, declined to say whether Mr. Biden supported a menthol ban, but he noted the president’s past support for tobacco control measures.“We are thinking about all of our options that could help reduce tobacco use and address persistent disparities,” Mr. Munoz said.Dr. Gardiner and other public health advocates are particularly concerned about the growing popularity of menthol cigars and cigarillos among Black teenagers. The 2020 National Youth Tobacco Survey, conducted by the federal government, found that 6.5 percent of Black students in high school and middle school, smoked cigars and cigarillos compared with 2.5 percent who smoked traditional cigarettes. The F.D.A. says that menthol is the preferred flavor for the cigarillos, which are cheap and mass-produced, unlike premium cigars.Dr. Phillip Gardiner has been pushing for menthol bans in communities across the country. “It’s precisely at this time that we need strong public health measures,” he said.Jim Wilson/The New York TimesMenthol is a substance found in mint plants, and it can also be synthesized in a lab. It creates a cooling sensation in tobacco products and masks the harshness of the smoke, making it more tolerable. Some studies have shown that menthol also acts as a mild anesthetic. Back in 1953, when menthol was not widely used, a Philip Morris Co. survey revealed that 2 percent of white smokers preferred a menthol brand, while 5 percent of Black smokers did, according to a review of tobacco industry documents by Dr. Gardiner that was published in 2004 by the medical journal Nicotine & Tobacco Research.“The industry looked at that and said, ‘We’re missing an opportunity,’ and consciously targeted the African-American community,” said Matthew L. Myers, president of the Campaign for Tobacco-Free Kids, which has long lobbied for a menthol ban and also helps fund the African American Tobacco Leadership Council.What followed has been well-documented in records made public from numerous lawsuits, that tobacco companies have targeted Black communities with menthol cigarettes for decades. They distributed free samples, offered discounts and sponsored countless concerts and special events, among them the famous Kool Jazz Festival. Tobacco companies also gained good will by advertising in newspapers and magazines geared to a Black readership — and by donating money to civil rights organizations.The companies have also been frequent donors to Black political candidates, and they have been generous supporters of the Congressional Black Caucus and the Congressional Black Caucus Foundation. Officials with Juul and Altria, which owns Philip Morris and also has a 35 percent stake in Juul, serve on the foundation’s corporate advisory board.The Biden administration still lacks a permanent F.D.A. commissioner, and Dr. Janet Woodcock, the acting commissioner, has not been vocal on tobacco issues. But public health advocates were heartened by the confirmation on Thursday of Xavier Becerra, the former attorney general of California, as the secretary of health and human services. In California, Mr. Becerra took aggressive action against tobacco and e-cigarette companies. In August, California became the second state — after Massachusetts’ lead — to ban the sale of all flavored tobacco products. (The law is on hold, pending an industry-sponsored referendum to repeal it, which will be on the ballot in November 2022.)The tobacco industry is in a tricky spot. For several years, the largest companies, Altria and R.J. Reynolds Tobacco, now owned by British American Tobacco, have sought to position themselves as transforming their companies into responsible businesses being eager to to preventing young people from smoking and to developing less harmful products. For critics, the industry’s lobbying to protect its menthol brands contradicts that assertion.“It doesn’t seem very transformative if you’ve taken zero steps to address a particular product that has so disproportionately and detrimentally harmed Black Americans,” said Maura Healey, the attorney general of Massachusetts, which enacted a ban on flavors, including menthol, in June. “It’s time for the F.D.A. to act on the scientific evidence that is out there.”A 2008 issue of Essence magazine. Tobacco companies gained good will by advertising in newspapers and magazines geared to a Black readership — and by donating money to civil rights organizations.Tony Cenicola/The New York TimesThe number of Americans who smoke cigarettes has declined to 14 percent in 2019 from a peak of 40 percent in the mid-1960s, according to the F.D.A. That translates to an estimated 34.1 million adult smokers in the United States, nearly 20 million of whom smoke menthol cigarettes. Roughly 480,000 Americans die each year from tobacco-related illnesses and more than 16 million Americans live with a smoking-related disease. In 2009, Congress gave the F.D.A. the authority to regulate the tobacco industry. That year, the Family Smoking Prevention and Tobacco Control Act banned all intentionally flavored cigarettes except menthol, which it referred to the F.D.A. for further study. The F.D.A. came close to a ban under the Obama administration but did not have sufficient White House support.In 2018, Dr. Scott Gottlieb, the first F.D.A. commissioner of the Trump administration, announced the agency would ban menthol cigarettes. He was immediately opposed by Senator Richard Burr, Republican of North Carolina, one of the few unapologetically pro-tobacco lawmakers left in Congress.Mr. Burr often promotes the jobs that the industry provides in his home state. His sons have two of those jobs: Tyler Burr works in state governmental affairs at R.J. Reynolds Tobacco Co., and William Burr works in regulatory affairs at Altria, which owns Philip Morris.After the announcement, Mr. Burr started dispatching oversight letters to the F.D.A. every Friday from mid-November 2018 through early January 2019, with the exception of the week of Thanksgiving. Emails obtained under the Freedom of Information Act show the hundreds of minute questions from Mr. Burr that tied up staff for weeks. He also demanded personal travel records for the agency’s seven center directors and accused the F.D.A. of leaks.The F.D.A. did not back down, but Mr. Burr helped to persuade the Trump administration to kill the plan in early 2019, according to former White House officials. Mr. Burr’s office declined to comment. David Sutton, a spokesman for Altria, which makes Marlboro and other brands that come in menthol, defended keeping menthol cigarettes on the market.“Prohibition and criminalization of adult behavior does not work for products intended for adults 21-plus,” Mr. Sutton said.Kaelan Hollon, a spokeswoman for R.J. Reynolds, whose Newport brand is the biggest menthol seller in the United States, said a menthol ban would infringe on the rights of adults who preferred it to plain tobacco.But such arguments ignore the fact that most smokers start the habit and become addicted to nicotine when they are young, and are most likely to seek flavored products, according to the F.D.A.At this point, the F.D.A. could again propose a federal ban, which would then have to be approved by the White House. Alternatively, Congress could adopt legislation expanding the current restrictions on sales of flavored cigarettes to include menthol — effectively undoing the current exemption.More than 120 localities have already enacted bans of flavored tobacco products, including menthol cigarettes, according to the Campaign for Tobacco-Free Kids. The African American Tobacco Control Leadership Council is running an anti-menthol campaign with Delta Sigma Theta, a historically Black sorority, and others. The council is also a plaintiff, along with the Action on Smoking and Health, in the citizens’ petition that forced the April 29 deadline for the F.D.A. to say whether or not it will ban menthol.Advocates hope President Biden, whose campaign had strong support from Black voters and who has put addressing health inequities front and center, will come out in favor of a ban.Bryan Thomas for The New York TimesThe Center for Black Health and Equity, a nonprofit organization in North Carolina, has also pushed hard on the issue, enlisting churches to sponsor “No Menthol Sundays.”In recent years, the tobacco industry has joined forces with certain civil rights activists, among them the Rev. Al Sharpton, who according to the California Department of Public Health, visited Black communities in the state, raising fear that a menthol ban would give the police an excuse to stop and frisk more Black individuals. Mr. Sharpton also helped to defeat a ban in New York.Ms. Bass has lost patience with that argument, saying a ban would prohibit selling menthol cigarettes, not possessing them.Ms. Bass said that a majority of lawmakers, including those in the Congressional Black Caucus, favor banning all tobacco flavors, including menthol. Eighty percent of the Congressional Black Caucus members voted last year for legislation that would have banned menthol cigarettes.Marc Scheineson, a lawyer with Alston and Bird, who represents small tobacco companies, believes that Representative James Clyburn, Democrat of South Carolina, may be the decisive vote. Mr. Clyburn was instrumental in developing support for Mr. Biden among Black Americans during his presidential campaign.“He can get whatever he wants,” Mr. Scheineson said. “I’m sure he’s got a wish list, but I’m sure all the African-American groups are coming to him and he’s got to prioritize.”Last year, Mr. Clyburn was absent for the House vote on legislation that would have banned menthol cigarettes. He has kept a low profile on the issue, not lobbying for tobacco companies but not standing in the way, either. Mr. Clyburn did not return requests seeking comment.Dr. Gottlieb believes the Biden administration will finally ban menthol cigarettes.“We opened the door on this in a Republican administration,” he said. “You don’t think a Democratic administration will finish the business? Of course they will.”

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How People Are Dealing with Distorted Smell

Samantha LaLiberte, a social worker in Nashville, thought she had made a full recovery from Covid-19. But in mid-November, about seven months after she’d been sick, a takeout order smelled so foul that she threw it away. When she stopped by the house of a friend who was cooking, she ran outside and vomited on the front lawn.“I stopped going places, even to my mom’s house or to dinner with friends, because anything from food to candles smelled so terrible,” Ms. LaLiberte, 35, said. “My relationships are strained.”She is dealing with parosmia, a distortion of smell such that previously enjoyable aromas — like that of fresh coffee or a romantic partner — may become unpleasant and even intolerable. Along with anosmia, or diminished sense of smell, it is a symptom that has lingered with some people who have recovered from Covid-19.The exact number of people experiencing parosmia is unknown. One recent review found that 47 percent of people with Covid-19 had smell and taste changes; of those, about half reported developing parosmia.“That means that a rose might smell like feces,” said Dr. Richard Doty, director of the Smell and Taste Center at the University of Pennsylvania. He noted that people typically recover their smell within months.Right now, Ms. LaLiberte can’t stand the scent of her own body. Showering is no help; the smell of her body wash, conditioner and shampoo made her sick.What’s more, she detected the same odor on her husband of eight years. “There is not a whole lot of intimacy right now,” she said. “And it’s not because we don’t want to.”“It’s a much bigger issue than people give it credit for,” said Dr. Duika Burges Watson, who leads the Altered Eating Research Network at Newcastle University in England and submitted a journal research paper on the topic. “It is something affecting your relationship with yourself, with others, your social life, your intimate relationships.”“That means that a rose might smell like feces.”Caroline Tompkins for The New York TimesR.I.P. Dinner Dates and ‘Spontaneous Kissing’Many sufferers of parosmia lament the loss of social customs, like going out to dinner or being physically close with loved ones, especially after an already-isolating year.“For me it’s a freaking battle,” said Kaylee Rose, 25, a singer in Nashville. She’s been playing live music in bars and restaurants across the country, and walking into those spaces has become unpleasant. “I was in Arizona for a show, and we went into a restaurant and I almost threw up,” she said. But having to deal with people’s reactions to her condition is almost worse.“My friends keep trying to get me to try their food because they think I am exaggerating.” Now she skips most social gatherings, or goes and doesn’t eat.Jessica Emmett, 36, who works for an insurance company in Spokane, Wash., got Covid twice, once in early July and once in October. Parosmia has been a lingering symptom. “I feel like my breath is rancid all the time,” she said.Before she touches her husband, she uses mouthwash and toothpaste. Even then, she can’t shake the feeling that she stinks. And it’s not just her breath. “My sweat, I can smell it, and it’s altered a bit,” she said.The result: a lot less intimacy. “There is no really passionate, spontaneous kissing,” she said.Her only consolation is that she’s been with her husband for more than 20 years. “How would you explain this to someone you are trying to date?” she said.Dr. Burges Watson said she has come across young people with parosmia who are nervous to make new connections. “They can be repulsed by their own body odors,” she said. “They find it very difficult to think about what other people might think of them.”When Ms. Rose first started experiencing parosmia, her boyfriend didn’t understand it was a real condition. And though more sensitive to her needs now, it still can feel lonely. “I wish for one meal he could be in my shoes,” she said.She has also had family members who think she is overreacting. She remembers one day close to Thanksgiving, when her mother ordered her a special meal with a smell she could tolerate, and her sister accidentally ate it. A fight ensued. “My sister thought I was being overly sensitive,” she said. “That was really frustrating.”Many people with parosmia feel isolated because people around them don’t get what they are going through, Dr. Doty said. “They hope people can relate to their problems, but often they can’t.”Ms. LaLiberte said she can finally sit next to her husband on the couch. “I am still self-conscious about myself though,” she added. “Mine hasn’t improved yet.”Finding a CommunitySome parosmia sufferers have turned to Facebook groups to share tips and vent to people who can relate to their symptoms. “I went to the doctor, and the doctor legitimately looked at me like I was a crazy person,” said Jenny Banchero, 36, an artist in St. Petersburg, Fla., who has had parosmia since early September. “It wasn’t until I joined a Facebook Group that I learned people take this seriously.”Sarah Govier, a health care worker in England who experienced parosmia after getting Covid-19, created Covid Anosmia/Parosmia Support Group over the summer. “The day I opened it in August, five or six people joined,” she said. “By January we hit 10,000 people.” Now it has nearly 16,000 members.Another Facebook group, AbScent, which was started before the pandemic and is associated with a charity organization, has seen increased interest. “People are coming from all over, from South America, Central Asia, Far East Russia, the Philippines, Australia, New Zealand, South Africa, India and Canada,” said Chrissi Kelly, the founder of AbScent.In March, Siobhan Dempsey, 33, a graphic designer and photographer in Northampton, England, posted to the Covid Anosmia/Parosmia Facebook group: “I’m happy to say that I have now got 90 percent of my taste and smell back after almost a year of catching Covid.” She was flooded with congratulatory remarks.It had been a long journey for her. For months, everything had a burning, chemical odor. Vegetables, which made up most of her diet since she is a vegetarian, were intolerable. “Anything sweet was terrible,” she said. “Dr. Pepper, Fanta, it was disgusting.”In the past few weeks, however, she’s noticed a shift. “It sounds cliché, but this past weekend in the U.K. was Mother’s Day, and my partner and 3-year-old boy bought me flowers,” she said. “I was like, ‘These smell really nice.’”

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Covid Has Traumatized America. A Doctor Explains What We Need to Heal.

Serious illness and suffering. Fear and fresh awareness of death. The uncertainty they all bring and what, for each, would constitute humane and effective medical treatment. Those physical and emotional concerns, central to palliative care, have forced their way into so many of our lives during the pandemic, even as we edge toward some skewed version of normalcy. They’re also the concerns that Dr. Diane E. Meier has been working on and thinking deeply about for decades. Meier, 68, is the longtime director of the Center to Advance Palliative Care, which is part of New York City’s Mount Sinai Hospital, and a 2008 recipient of a MacArthur Foundation “genius” fellowship. She has been a uniquely qualified observer of the Covid-induced cataclysms — often existential — experienced by patients and physicians. “If ever we needed to be reminded of how important human connection and support is for people with serious illness,” Meier says, “this pandemic has made the point very, very clearly.”

In September, you were quoted in The Washington Post saying that during the pandemic, other physicians have been looking to palliative-care doctors “to be the human side of medicine.” What does that imply about the medical system’s deficiencies? That the public’s experience with the medical profession has been subsumed by the marketplace, where there is enormous pressure on everyone working in the system to see multiple patients in a very short period of time and ensure that the services we offer are well reimbursed. Which is why the pandemic was such a blow to the economy of many health care systems: The major sources of income, which had to do with elective surgical and other procedures, were shut down because of the need to repurpose health systems for masses of people with Covid. The pandemic is the exemplar of why that is such a fragile foundation for a major first-world country’s health care system. The drivers are about doing what is necessary to get paid as opposed to what we thought our profession was all about, which was serving human beings who are suffering. It’s not that my colleagues are uncaring or don’t realize that their relationship with patients is a powerful instrument of healing; my point is not that my colleagues don’t want to be bothered. They can’t bother. So they’re relieved to have palliative-care colleagues who will take the time that they know their patients and patients’ families need. That enables our colleagues to overcome the moral distress and ethical inner conflict that the business side of medicine creates.

Do patients feel differently about palliative care when the need for it is caused by something unfamiliar like Covid-19 as opposed to, say, a cancer diagnosis? The fear and anxiety is completely different. It’s not that getting a diagnosis of dementia or cancer or kidney failure is not frightening. It is, but it’s somewhat normalized. You know people it’s happened to. Whereas the Covid pandemic — there was so much interesting coverage marking the 500,000th death about how invisible all the grieving is and how the whole country is in a state of numbness and denial because it is all too much to take in. It is too much to process. Let’s say that’s been your mind-set: It’s not going to happen to me. Then it does. All that denial falls apart. All that numbness won’t protect you. It is frightening, and compounded by the fact that family members can’t be with patients. One of the largest sources of suffering is the isolation of the patient and that the people who love them best can’t be with them. I will tell you, iPads and iPhones do not substitute.

Dr. Diane E. Meier in her office at Mount Sinai in 1997.
Linda Rosier

Has the pandemic affected our collective attitude toward grief? There are many shadow pandemics. One is the trauma to the entire health profession during this last year. The other trauma is the roughly 10 people for every person who has died from Covid who are grieving. That’s over five million people. That is a shadow pandemic that will be with us long after we get the virus under control. Our current president has worked hard to begin to address that through the ritual ceremonies to remember the dead and honor them, and he has talked a lot about his own losses, to normalize talking about losses and how they’re with you every day. That’s important. We need other people to do it too.

This is a bit of a sidetrack: In December, you published a piece in JAMA Internal Medicine about the “slippery slope” of increased access to physician-assisted death. But I’m still not quite clear why there would be a major concern about people unduly requesting medical assistance with ending their life when, by and large, people don’t want to die. Countries that have enabled euthanasia or assisted suicide have claimed that it has to be totally voluntary, cannot be due to financial or family pressures, cannot be due to untreated or unrecognized depression and cannot be due to untreated, poorly managed pain. They state that, and yet there is no evidence that those are not the major factors driving this. What it takes to adhere to those guidelines is incredibly expensive and time-consuming and doesn’t happen. That’s the situation in the Netherlands and Belgium and Canada: All the heartfelt adherence to restrictions that are announced when you first get the public to vote in favor of this go up in smoke once the practice is validated. And it’s always with the talking points that it’s about relief of suffering, that the person, even though he cannot say this, would agree that he would be better off dead. Ethically, do I think people should have the right to control the timing of their death? I do. I think it’s dangerous public policy. It’s a dangerous path to go down with the claim that it is all about respect for autonomy, when the real drivers are getting rid of a painful and expensive burden on society.

But couldn’t we always say that if people had access to better care then they wouldn’t consider this other option? What if the reality is that access to better care isn’t there? Are we saying to suffering people, “There are ways to still find meaning in life; we just can’t necessarily guarantee you’ll be able to take advantage of them”? There is a real tension there. Our system is so broken. But do we solve that problem by offering them physician-assisted death? I wouldn’t want to be part of that society. There was a recent case in Canada: a guy with neurodegenerative disorder who was cognitively intact. In order to go home from the hospital, he needed 24-hour care, and the government would not pay for 24-hour care. He recorded hospital staff offering him medical aid in dying as an alternative. You think that doesn’t create pressure on people who already feel like burdens? They need to be met with a resounding commitment to continued relationship. Not: “You’re right. I agree you’d be better off dead. Here’s a prescription.” That pushes someone who is struggling right over the cliff.

Might there be a lack of understanding on the part of some advocates of physician-assisted death that while palliative care maybe can’t relieve the entirety of one’s pain, it can still help patients find quality of life? It’s important to disabuse you of the notion that pain is the reason people request medical aid in dying. Pain is not the reason. It is existential and spiritual. The only treatment for that is relationship, attention, sitting with. Not trying to fix. That willingness to be with and engage the person in giving voice to that suffering is such a powerful intervention. It requires training. It’s a procedure. It isn’t about, “We can fix everything.” But we can enable giving voice to profound suffering, and that makes a huge difference.

Meier and a Mount Sinai colleague, Dr. R. Sean Morrison (right), discussing palliative care with Senator Sheldon Whitehouse of Rhode Island in Washington in 2011.
Kevin Wolf/Associated Press, for Center to Advance Palliative Care

Should we think of suffering as inevitable? That’s a great question, and the answer to any great question is “It depends.” It depends on the type of suffering. Dame Cicely Saunders used to talk about “total pain.” It was not just pain or constipation or fatigue or depression or difficulty sleeping. It was issues of purpose, meaning, identity, relationships. So while the practice of medicine is pretty good at the mechanics of treating things that cause tremendous suffering, the existential, spiritual and relationship fundamentals are addressed very often in the purview of palliative care teams. We see that as part of our job. In the rest of medicine, clinicians don’t, and people are left to find their way. If they’re not strongly embedded in a faith community or extended family, it causes tremendous suffering, because meaning comes through relationship. The fear of death is about the loss of relationship with the world and the people in it.

At this stage of your career, are there aspects of the human experience of chronic illness or pain that used to be mysterious to you that you now understand? It has to do with trauma. Trauma is widespread. In wealthy families and poor families; individual and family trauma; community trauma and societal trauma. We have so much of that here — just start with racism and go on. It is repressed and treated with denial. That doesn’t make it go away. It’s controlling how people respond to new trauma, whether it’s a diagnosis or a pandemic or a January 6th. So my perspective on trauma has a bigger scale than it used to — a species-level and tribal-level scale. And as I read the news, I don’t know whether we’re going to evolve our way out of this. The need to hate and kill the other is a determinative human characteristic and it informs so many aspects of our society. I also don’t see a disconnect between what has happened to the practice of medicine and that reality, because what’s happened to medicine is being driven by a societal commitment to profit above all else. And what is that? It’s trauma.

You could imagine somebody rolling their eyes at you, saying “You’re saying capitalism is trauma?” What has happened to the practice of medicine is that the public perception is that it has become totally transactional. That we do things either to make money or to avoid spending money. So, for example, many people of color fear that a conversation about whether or not they want cardiopulmonary resuscitation is not about what’s best for that patient; it’s about saving money for the hospital. Those perceptions are not wrong. That’s the problem. And there’s more than a kernel of truth in the perceptions of people feeling as if they or their loved one is being put through a marketplace of M.R.I.s and P.E.T. scans and specialists and subspecialists, and everybody is billing. The visibility of the extraction mind-set of the practice of medicine — it’s not subtle, and the public knows it. I’m worried about blowing the hard-earned trust that our profession worked toward over hundreds of years through, essentially, the commercialization of health care delivery.

Can you tease out the link you suggested earlier between trauma and killing the other? The analogy is post-traumatic stress disorder: an overreaction to new traumas because the prior traumas were never addressed, never expressed, never worked through. So everything that happens re-triggers it. There’s a book called “The Body Keeps the Score,” and that’s what it’s about: Things that happened to you years ago don’t ever go away. They are embedded in your mind and body and inform how you react to things that happen today. In my typical mechanistic doctor manner, I will tell you that there are things to do about it: It’s called trauma-informed care. It’s literally as simple as asking people what happened to them. What happened during your childhood? Because people know. They’ve just never been asked. And until it is unearthed and respected for the power that it had in that person’s life, it is controlling. The only way to take back control is to bring it to consciousness and name it.

Have you found that there are common positive meanings people find in life when they’re seriously ill that are applicable to those who aren’t? Yes. You may have read people talking about how while they would not wish their diagnosis on anyone, they are grateful for it. Because it made them stop worrying about things that aren’t important and focus on the things that are. That might be putting the garden in or spending time with grandchildren. Or my colleague — she’s 60 — said she’s going to become a bat mitzvah. She’s not sick, but the pandemic focused her on things she had put off. And she realized, What am I waiting for? That process of reflection requires pausing the racing in circles that our normal life tends to be: Get up at 6, go to the gym, go to work, etc. Whether we’re pausing because it has been forced on us by the pandemic or because we have a new diagnosis that requires us to reorganize our days — the busy-ness that has characterized everyday life for most people gets in the way of reflection. But it is a very common phenomenon for people to take the time and reflect about what’s important. People are trying desperately to make room for one’s inner life.

This interview has been edited and condensed for clarity from two conversations.

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Coronavirus vaccines: PM to telephone EU leaders in bid to stop export ban being imposed

SharecloseShare pageCopy linkAbout sharingimage copyrightGetty ImagesBoris Johnson is expected to speak to his EU counterparts this week as a row over Covid vaccine supplies continues.EU leaders will hold a virtual meeting on Thursday to discuss a ban on Oxford-AstraZeneca vaccine exports to the UK – but the PM aims to put the UK’s case in one-on-one phone calls before that.The European Commission president says the EU can “forbid” vaccines made on the continent being sent to the UK.The latest flashpoint appears to be over doses made in a Dutch factory.Meanwhile, the long-awaited results of the US trial of the Oxford-AstraZeneca vaccine, which involved more than 32,000 volunteers, show that the jab is safe and highly effective.Several European leaders paused rollout of the vaccine amid concerns of a possible link with blood clots. UK and EU regulators said there was no evidence the vaccine causes blood clots.The dispute over vaccine exports from the EU and a potential ban comes after European leaders have faced criticism for the slow pace of the vaccine rollout on the continent.Less than 12% of the EU’s population is reported to have received the vaccine, compared with nearly 40% in the UK.PM hails record-breaking day with 844,285 jabsEU should not ‘build walls’ around vaccinesWhy is the EU having vaccine problems?The EU has encountered production problems with the Pfizer-BioNTech, Moderna and Oxford-AstraZeneca vaccines. British-Swedish manufacturer AstraZeneca said the fact that EU contracts were signed later than with the UK caused problems with supplying their vaccine.Downing Street has previously said that it does not believe that vaccine supply issues will affect the current road map for easing lockdown restrictions or the targets for administering jabs.But the Guardian says a report by data analysts Airfinity suggests that if an export ban was applied to all vaccines – including those from Moderna and Johnson & Johnson that have yet to be deployed in the UK – it would see the offer of a first vaccine to every adult completed in late August rather than the target date of 31 July.European Commission President Ursula von der Leyen said that 41 million vaccine doses have been exported from the bloc to 33 countries in six weeks, with more than 10 million jabs going to the UK.She has said that, in contrast, the EU is still waiting for vaccine exports from the UK and she warned last week that if supplies in Europe do not improve, the bloc “will reflect whether exports to countries who have higher vaccination rates than us are still proportionate”.image copyrightReutersArticle 122 of the EU treaty allows measures to be taken “if severe difficulties arise in the supply of certain products”. Those measures could in theory include export bans and the waiving of patent and intellectual property rights on vaccines.Mrs von der Leyen said this weekend that the bloc has the power to “forbid” exports, adding: “That is the message to AstraZeneca.”A government source has described the latest reports from the EU as “concerning”.The latest point of contention between the UK and the EU appears to be over vaccine doses being manufactured at a plant in the Netherlands, with an EU official telling Reuters that those doses should be distributed among member states, and not sent to Britain.Mr Johnson is expected to use his calls to European leaders in the first half of this week to persuade them to veto any proposal that would prevent vaccine exports from entering the UK.French president Emmanuel Macron and German Chancellor Angela Merkel are among those likely to be on the PM’s list, according to British officials quoted by the Financial Times.SUPPORT BUBBLES: What are they and who can be in yours?FACE MASKS: When do I need to wear one?SCHOOLS: What will happen if children catch coronavirus?TESTING: What tests are available?JOBS: How will I be kept safe at work?Defence Secretary Ben Wallace said on Sunday that the EU should not “build walls” around the distribution of vaccines and should seek to meet its contractual “obligations”.Mr Wallace told the BBC that the language being used by the European Commission was “counterproductive”, adding: “Trying to… build walls around this would only damage both EU citizens and United Kingdom.”EU commissioner Mairead McGuinness has said that no decisions had been made over any possible export ban and urged all sides to “calm down”.The EU row over vaccines also comes as speculation continues over whether summer holidays abroad will be permitted for those in the UK this year.Mr Wallace said an extension on the ban on foreign holidays cannot be ruled out. Currently, international travel will not be allowed for those in England, Scotland and Wales before 17 May.His comments came after a scientist on a government advisory body said summer holidays overseas are “extremely unlikely” because of the risk of travellers bringing variants to the UK.Meanwhile, the prime minister hailed a “record-breaking day” for the UK’s vaccine rollout, after a combined total of 844,285 first or second doses were given on Saturday, up from 711,157 on Friday.It means that more than 27.6 million people in the UK – more than half the adult population – have now received at least one dose of a vaccine.”I WAS SO SICK, IN SO MUCH PAIN”: Understanding endometriosisYOUR QUESTIONS ANSWERED: Covid vaccine trials for children

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Covid vaccine: US trial of AstraZeneca jab confirms safety

SharecloseShare pageCopy linkAbout sharingimage copyrightReutersResults from the long-awaited US trial of the Oxford-AstraZeneca Covid vaccine are out and confirm that the shot is both safe and highly effective. More than 32,000 volunteers took part, mostly in America, but also in Chile and Peru. The vaccine was 79% effective against stopping symptomatic Covid disease and 100% effective at preventing people from falling seriously ill. And there were no safety issues regarding blood clots.That should further reassure some EU countries that recently paused rollout of the vaccine amid concerns about a possible link. Some are already starting to use it again now that Europe’s medicines regulator has completed its review and has also concluded the vaccine is safe and effective.UK and EU clot review confirms safety of vaccineThis new trial data may also prove useful in reassuring people about how well the vaccine works to protect the elderly against Covid-19 illness.Several countries initially would not authorise the use of the vaccine in adults over 65, citing lack of evidence. Around a fifth of the volunteers in this trial were over 65 and the vaccine – given as two doses, four weeks apart – provided as much protection to them as to younger age groups. Hundreds of thousands of people in the UK are already receiving the AstraZeneca vaccine every day, so these numbers are tiny by comparison. But the results are vital for the US and should clear the way for the vaccine to be approved by regulators there within the next month or two.Lead investigator of the Oxford University trial of the vaccine, Prof Andrew Pollard said: “‘These results are great news as they show the remarkable efficacy of the vaccine in a new population and are consistent with the results from Oxford-led trials. “We can expect strong impact against Covid-19 across all ages and for people of all different backgrounds from widespread use of the vaccine.”Prof Sarah Gilbert, co-designer of the vaccine, said: “In many different countries and across age groups, the vaccine is providing a high level of protection against Covid-19 and we hope this will lead to even more widespread use of the vaccine in the global attempts to bring the pandemic to an end.”Prof Gilbert said there were always cases of people falling ill after receiving a vaccine, particularly when very large numbers of were receiving a jab, but that did not mean that the vaccine was responsible for the problems. Meanwhile thousands of people a day were now dying across Europe from Covid-19.She said: “It is really important that we get the chance to protect people as quickly as possible. This vaccine will save lives.”

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'Hunger hormone' ghrelin affects monetary decision making

Higher levels of the stomach-derived hormone ghrelin, which stimulates appetite, predict a greater preference for smaller immediate monetary rewards over larger delayed financial rewards, a new study finds. The study results will be presented at ENDO 2021, the Endocrine Society’s annual meeting.
This research presents novel evidence in humans that ghrelin, the so-called “hunger hormone,” affects monetary decision making, said co-investigator Franziska Plessow, Ph.D., assistant professor of medicine at Massachusetts General Hospital and Harvard Medical School, Boston. She said recent research findings in rodents suggested that ghrelin may play a part in impulsive choices and behaviors.
“Our results indicate that ghrelin might play a broader role than previously acknowledged in human reward-related behavior and decision making, such as monetary choices,” Plessow said. “This will hopefully inspire future research into its role in food-independent human perception and behavior.”
Ghrelin signals the brain for the need to eat and may modulate brain pathways that control reward processing. Levels of ghrelin fluctuate throughout the day, depending on food intake and individual metabolism.
This study included 84 female participants ages 10 to 22 years: 50 with a low-weight eating disorder, such as anorexia nervosa, and 34 healthy control participants. Plessow’s research team tested blood levels of total ghrelin before and after a standardized meal that was the same for all participants, who had fasted beforehand. After the meal, participants took a test of hypothetical financial decisions, called the delay discounting task. They were asked to make a series of choices to indicate their preference for a smaller immediate monetary reward or a larger delayed amount of money, for instance, $20 today or $80 in 14 days.
Healthy girls and young women with higher ghrelin levels were more likely to choose the immediate but smaller monetary reward rather than waiting for a larger amount of money, the researchers reported. This preference indicates more impulsive choices, Plessow said.
The relationship between ghrelin level and monetary choices was absent in age-matched participants with a low-weight eating disorder. People with this eating disorder are known to have ghrelin resistance, and Plessow said their finding might be another indicator of a disconnect between ghrelin signaling and behavior in this population.
The study received funding from the National Institutes of Health and a Charles A. King Trust Research Fellowship Award to Plessow. Naila Shiraliyeva, M.D., a research fellow at Massachusetts General Hospital, will present the study findings at the meeting.
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Materials provided by The Endocrine Society. Note: Content may be edited for style and length.

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Weekly insulin helps patients with type 2 diabetes achieve similar blood sugar control to daily insulin

A new once-weekly basal insulin injection demonstrated similar efficacy and safety and a lower rate of low blood sugar episodes compared with a daily basal insulin, according to a phase 2 clinical trial. The study results, which will be presented at ENDO 2021, the Endocrine Society’s annual meeting, compared an investigational drug called basal insulin Fc (BIF) with insulin degludec, a commercially available long-lasting daily insulin, in patients with type 2 diabetes.
“These study results demonstrate that BIF has promise as a once-weekly basal insulin and could be an advancement in insulin therapy,” said Juan Frias, M.D., the study’s principal investigator and the medical director of the National Research Institute in Los Angeles, Calif.
The reduced number of injections with weekly insulin may improve adherence to insulin therapy, which could result in better patient outcomes than for daily basal insulins, Frias said. Once-weekly dosing also may increase the willingness of patients with type 2 diabetes to start insulin therapy when oral medication alone no longer gives adequate blood glucose control, he added.
The 32-week clinical trial was conducted in 399 patients and sponsored by Eli Lilly and Company. All patients had type 2 diabetes and were previous users of basal insulin combined with oral antidiabetic medications.
The patients received random assignments to one of three treatment groups: once-weekly injections of BIF at one of two different dosing algorithms (with different goals for fasting blood glucose levels) or the standard once-daily injections of insulin degludec. One fasting glucose target for patients receiving BIF was 140 milligrams per deciliter (mg/dL) or less, and the other was at or below 120 mg/dL. The fasting glucose target for insulin degludec was 100 mg/dL or less.
Compared with insulin degludec, patients taking BIF achieved similar long-term blood glucose control, as measured by hemoglobin A1c, the researchers reported. Study participants had an average A1c of 8.1 percent at the beginning of the study and at the end of the study had an average improvement in A1c of 0.6 percent for BIF and 0.7 percent for insulin degludec, the data showed.
Additionally, BIF use resulted in significantly lower rates of hypoglycemia, or low blood sugar (less than 70 mg/dL). Severe untreated hypoglycemia is a dangerous complication that can cause seizures, loss of consciousness and death. Frias said BIF has “the potential of a flatter and more predictable action than the current daily basal insulins, which may have contributed to the lower rates of hypoglycemia.”
Regarding safety, BIF had a generally comparable adverse event profile to that of insulin degludec, he said.
“Based on our promising data, further research with BIF has been initiated in patients with type 1 diabetes and other type 2 diabetes patient populations,” Frias said.
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Materials provided by The Endocrine Society. Note: Content may be edited for style and length.

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Evidence supports COVID-19 hearing loss link, say scientists

Hearing loss and other auditory problems are strongly associated with Covid-19 according to a systematic review of research evidence led by University of Manchester and NIHR Manchester Biomedical Research Centre (BRC) scientists.
Professor Kevin Munro and PhD researcher Ibrahim Almufarrij found 56 studies that identified an association between COVID-19 and auditory and vestibular problems.
They pooled data from 24 of the studies to estimate that the prevalence of hearing loss was 7.6%, tinnitus was 14.8% and vertigo was 7.2%.
They publish their findings in the International Journal of Audiology.
However, the team — who followed up their review carried out a year ago — described the quality of the studies as fair.
Their data primarily used self-reported questionnaires or medical records to obtain COVID- 7 19-related symptoms, rather than the more scientifically reliable hearing tests.

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Eating processed meat could increase dementia risk

Scientists from the University’s Nutritional Epidemiology Group used data from 500,000 people, discovering that consuming a 25g serving of processed meat a day, the equivalent to one rasher of bacon, is associated with a 44% increased risk of developing the disease.
But their findings also show eating some unprocessed red meat, such as beef, pork or veal, could be protective, as people who consumed 50g a day were 19% less likely to develop dementia. 
The researchers were exploring whether there is a link between consumption of meat and development of dementia, a health condition which affects 5%-8% of over 60s worldwide.
Their results, titled Meat consumption and risk of incident dementia: cohort study of 493,888 UK Biobank participants, are published today in the American Journal of Clinical Nutrition.
Lead researcher Huifeng Zhang, a PhD student from Leeds’ School of Food Science and Nutrition, said: “Worldwide, the prevalence of dementia is increasing and diet as a modifiable factor could play a role.
“Our research adds to the growing body of evidence linking processed meat consumption to increased risk of a range of non-transmissible diseases.” 
The research was supervised by Professors Janet Cade and Laura Hardie, both at Leeds.

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