KATYA ROGERS Hey, podcast listeners, it's Kat, I'm here to tell you about an upcoming event that you don't want to miss. December 7th, we are hosting our very first OTM trivia night. I'll be there, Brooke will be there, the OTM producers, and hopefully a whole bunch of you guys! Answering questions, having some laughs and there will be tons of prizes. Ever wanted a hat crocheted by Brooke? Now's your chance. We'll also be giving away OTM totes and mugs, maybe even a lipstick. You don't want to miss it. All you need to do to get an invite for this event, which will be on Zoom, is become a sustaining member if you've never donated before, it just takes a second. Go to onthemedia.org, hit the support button or text the letters O-T-M to 70101. It's those sustaining donations, the monthly support: 10-12-20 bucks, that's money that helps us ensure that we have enough funds to keep this show coming to is for months and years to come. If you're already an OTM sustainer, thank you. We will be emailing you an invite to join us for trivia and everyone else who's listening who isn't yet a sustainer– sign up and see you there.
NEWS REPORT The US, Australia and Indonesia are among countries to bar travelers from Southern African nations, where the variant was first reported. [END CLIP]
BROOKE GLADSTONE When it comes to alerting the world about a new variant, no good deed goes unpunished. From WNYC in New York, this is On the Media, I'm Brooke Gladstone. On the show this week, a consumer's guide to navigating stories about Omicron. For one thing, beware headlines that stress its newness.
KATHERINE J WU It is a new variant, but it's not a completely new virus. It's not a pigeon transforming into a tiger. It's a pigeon that's maybe grown a mustache.
BROOKE GLADSTONE Also, we've been talking about that so much in the last 22 months. Are we having the right conversations?
KATIE ENGELHART There's so much obfuscation and euphemism around end of life care. So, in my book, People Don't Pass Away, they're given sedative drugs, which lead to dehydration and kidney failure, which is their ultimate cause of death.
BROOKE GLADSTONE It's all coming up after this.
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BROOKE GLADSTONE From WNYC in New York, this is On the Media, I'm Brooke Gladstone.
By now, you know, we have a new arrival in the pandemic landscape. Omicron, and you also probably know that's about all we know.
ANDERSON COOPER So what is your message tonight? Do we know enough yet about Omicron to be specific about really anything? No, actually, Anderson, we don't. [END CLIP]
BROOKE GLADSTONE The lack of information was followed on Wednesday by the sound of the inevitable shoe dropping.
NEWS REPORT We have discovered our first case not only here in San Francisco, but the entire country. [END CLIP]
BROOKE GLADSTONE Omicron is in the building and after the wave of crises and cases wraught by Delta, it's no surprise that the phrase 'new variant' creeps you out. You may wonder, what does this mean for me? From my holiday plans... For humanity? And so to help make sense of the mutations and the mystery, we bring you our latest Breaking News Consumers Handbook: Variant Edition. The scientific community is now pretty well prepared to assess variants. We asked Catherine J. Wu, staff writer for The Atlantic, who covers science, if the media were ready to.
KATHERINE J WU I will start and end with the good because it's always nice to sandwich the bad. But no, I mean, I think it's been extraordinary to see how quickly both the scientific and the science journalism community have responded to this news. And you know, I've seen many of my colleagues really work hard to cover this responsibly, inject nuance wherever they can. And I have so, so, so appreciated whenever journalists have been unafraid to say, 'we don't know.' It's not always the most satisfying to read, and certainly not the most satisfying thing to put in a headline. But it is the reality. That said, you know, I think where the coverage has gone wrong is we've kind of veered away from what we do and don't know. It's OK to sort of put forth 'here's what scientists are discussing, here's what's possible, here's what we'll be looking for,' but there's another tier of that what we can call wild speculation.
BROOKE GLADSTONE And so give me some specifics in the coverage that have made you cringe. Or at least, you know, crinkle your eyebrows.
KATHERINE J WU I was a little frustrated to see some folks being quoted saying, This is a whole new pandemic. We're starting over from scratch. You know, the vaccines could be rendered obsolete. Those are really, really strong statements with really scary implications for a public that is exhausted from two years of crisis and uncertainty and heading into winter when we know more people are gathering. And it really does no one any good.
BROOKE GLADSTONE But is it wrong?
KATHERINE J WU Arguably some of that, I think, is wrong. I think when we say something like, you know, the vaccines will be rendered totally obsolete or useless, it really does make it sound like we are putting people back at square one. That's absolutely not going to be the case. This new variant, Omicron, it is a new variant, but it's not a completely new virus. It's not a pigeon transforming into a tiger. It's a pigeon that's maybe grown a mustache. It might be a little harder to recognize, but that does not mean that we're completely invalidating everything we've put in place so far. A way to frame this a little more responsibly is to say yes, we have a new variant that might erode some of the effectiveness of our vaccines, but not embrace it.
BROOKE GLADSTONE So the notion that this could be a whole new thing is wrong. Is that partly based on the fact that the word mutation itself is so scary? So if it's 30 mutations, it's 30 times scarier?
KATHERINE J WU Yeah, the word mutant and the word mutation, these are two terms that certainly are very loaded. They have sort of cultural and colloquial meanings. But in science, a mutation is sort of akin to a typo. Think about, you know, bodies of text. Sometimes typos are not a big deal. The word is still completely recognizable. Sometimes that makes the word harder to understand or changes the words meaning completely. But in much the same way, mutations in biology can be totally inconsequential. They can benefit the virus, or they can actively harm the virus. And until we really do those studies, we don't know what those 50 some mutations are actually going to do for Omicron.
BROOKE GLADSTONE You've said there are three key metrics we need to gauge in the face of a new variant. And those are the things that need to be preeminent in the coverage. Could you walk us through what we know about those three metrics, starting with number one, how quickly the variant spreads?
KATHERINE J WU This is a pretty important one. Viruses don't really want anything, but if they did want something, it would be to spread and to spread fast. And so this is what scientists are watching for right now. They're watching to see, you know, in most places in the world, Delta is the predominant variant. If Omicron is a better spreader than Delta, we can expect it to outcompete Delta, even within individual people we'll see this variant copying itself faster and just basically outpacing its competitor. That could cause problems if it has other traits that cause us issues.
BROOKE GLADSTONE The next one is is it capable of causing more serious disease than what we've previously encountered?
KATHERINE J WU This is a really difficult trait to pin down because the severity of disease that a variant causes it is not just about the virus, it's also about us diseases and interaction between host and pathogen. And even a pathogen is kind of wilier and packs a bigger punch. If it meets a really resilient host or a really young and feisty host, maybe it won't hurt that person so much. So when scientists are trying to study this, they also have to think about, OK, are the populations that these variants are infecting or are they comparable? You know, was one vaccinated? Is one younger? Does one have more access to treatments? Are hospitals super full in this area? You know, you can think of all the sort of confounding variables that make those comparisons just so difficult to make. And it also depends on what we're worried about, right? Death and serious disease are not the only metrics. We're also thinking about long COVID and the other debilitating symptoms that people can experience, so that metric, it's such a thorny question, but it's also something that scientists are trying to pay attention to right now.
BROOKE GLADSTONE The final one is whether it might be able to circumvent the immune protection left behind by past SARS-CoV-2 infections or COVID 19 vaccines, or whether it could evade immune focused treatments such as monoclonal antibodies.
KATHERINE J WU This is some of the data that will reach us the soonest, because vaccine makers and independent researchers are already taking blood from vaccinated and previously infected individuals and seeing if the antibodies in there can still block Omicron from getting inside of cells in petri dishes in the lab. That's not the entire picture of immune response, but it is a strong indication of one large component, and I think there are some predictions already trickling out and it comes back to, you know, our pigeon with a mustache idea. You know, once a pigeon dons a disguise like that, it is going to be a little bit less recognizable to certain members of the immune system. I think there's room for optimism here because certain parts of our immune system are way more resilient and flexible to mutation. And I think in my mind, no way that we are going to plummet to zero protection.
BROOKE GLADSTONE The coverage often references the W.H.O. labeling Omicron as a 'variant of concern,' like the FBI would call someone a person of concern. That title is, you know, concerning, but it's also vague. Could you explain what it means?
KATHERINE J WU So I think the first thing to know is that the W.H.O. has four designations for variants, and a variant of concern is kind of tier three out of four. Nothing has yet actually ascended to the highest level, which is a variant of high consequence. But it is important to keep in mind that Omicron has moved past being just a variant under monitoring, which is the first one and a variant of interest, which is Tier two. A variant of concern is what the W.H.O. designates a variant for which there is evidence or high likelihood that it's either going to be more transmissible, more deadly or more evasive of vaccines or therapeutics.
BROOKE GLADSTONE So they have enough data to at least come to the conclusion that it'll be one of those three?
KATHERINE J WU It's interesting. This is actually a contested point. There are some experts out there that say maybe we shouldn't have labeled this a variant of concern quite yet because we don't have the data 100 percent confirming that. We have high suspicion all around based on the information we have about Omicron's mutations, but we haven't actually seen the evidence. So oh, it's tough. I understand why the W.H.O. may have done this. It's certainly put a label on this variant that made people react quickly and maybe this variant will be demoted. That is totally possible. Maybe it will not be the big deal that some worry it could be.
BROOKE GLADSTONE Where would the earnest layperson find out about those things that we really want to know? Especially those big metrics about transmissibility, severity and vaccine resistance? Where do we go to make sure we have it up to the minute, and in context?
KATHERINE J WU This data is going to come out piecemeal and it's going to take a lot of hard work and attention to synthesize that data quickly. We're going to learn about some of those traits much faster than others. I think the World Health Organization and the CDC have already both done a really great job of keeping the public up to date, the World Health Organization has been issuing regular updates on Omicron, as well as other variants when necessary. And they've already laid out, you know, these are the three metrics for monitoring. Again, that's transmissibility, disease severity and immune evasiveness. And I think they're going to be carefully categorizing their updates so that they tell the public 'here is the metric that this new update could affect,' 'here's where you should sort of file this information.' It's not always going to be that clear cut, but it's actually been, I think, really nice to see so far how closely people have been paying attention.
BROOKE GLADSTONE So when do you think we'll begin to get a clearer idea about transmissibility? Severity? Vaccine resistance?
KATHERINE J WU I think we are going to start to see hints of those answers within a couple weeks. And I think one of the clearest timelines to think about is the vaccine effectiveness question. Because we kind of know how those experiments have to go. Scientists right now are either growing up this virus in the lab or engineering little versions of other viruses to look like Omicron and then testing to see whether those viruses can be blocked by antibodies in petri dishes in the lab so that it won't infect cells anymore. That's going to give us our first sense of how well vaccinated people or COVID recovered people are going to fend off Omicron, and we'll really start to see that, I think, within a couple weeks. We're also really just waiting on a lot of epidemiologic data. We're waiting to see who has caught this variant and how they're faring. And whether they were vaccinated, how sick they're getting, where the virus is geographically and how quickly it's moving. Those are all going to come out a little bit piecemeal.
BROOKE GLADSTONE And while we wait for science to flesh this all out and for the politicians to take purposeful action, what should we do to keep ourselves informed the best we can and to act?
KATHERINE J WU First thing is to remain calm and it is OK to turn off your computer or turn off your phone. Take a deep breath, go for a walk, come back and try and process it anew. We are in a holding pattern. It's OK to take a quick break. Take care of yourself and reassess what is currently in your pandemic toolkit. Do you have masks around? How long has it been since you got your first round of vaccines? Is there anyone in your life who was unvaccinated? One more huge perk of making sure that your vaccines are up to date and that people around you are protected? Is this starves the virus of opportunities to do us more harm. Right now, we're dealing with a Pigeon with a mustache, that does not preclude the possibility of a pigeon appearing in a top hat or a monocle further down the road. Let's keep our pigeons, pigeons and deal with them the best way we know how.
BROOKE GLADSTONE I thought you were going to say pigeon with a machete.
BROOKE GLADSTONE Katherine Wu, thank you so much.
KATHERINE J WU Thank you so much for having me again.
BROOKE GLADSTONE Katherine J. Wu is a staff writer at The Atlantic, where she covers science. Coming up when it comes to the prompt sharing of lifesaving data, no good deed goes unpunished. This is On the Media.
BROOKE GLADSTONE This is On the Media, I'm Brooke Gladstone. While we await more news about Omicron, let's remember how we learned about this new variant in the first place. Scientists across the globe detected it and promptly told us. On November 22nd, a Hong Kong public health researcher shared the genomes of a new coronavirus variant to the Global Initiative on Sharing all Influenza. A database community otherwise known as GISAID. The next day, Dr Sikhulile Moyo submitted more data on Omicron on behalf of the Botswana Harvard HIV Reference Library, shortly followed by Dr. Tulio de Oliveira, who uploaded data on behalf of his team at the Center for Epidemic Research and Innovation in South Africa. And in response...this.
NEWS REPORT The US, Brazil, Australia and Indonesia are among countries to bar travelers from southern African nations. Japan has banned all foreign arrivals. Morocco has halted all inbound flights and Israel has closed its borders for two weeks.
BROOKE GLADSTONE The quick response of those early data collectors clearly were given their due by a grateful planet.
STEPHEN COLBERT We're all lucky that South Africa alerted us to the dangers of all Macron and thanks to them. The White House issued a ban on travel from eight countries in southern Africa. So far, it's only been found in the southern African countries of Austria, Belgium, Canada, Czech Republic, Denmark, France, Germany, Hong Kong, Israel, Italy, Japan, Netherlands, Portugal, Spain, Sweden and the United Kingdom. Oh my God, that's most of it's a small world.
NEWS REPORT As you hear from African nations, specifically South Africa, saying that they feel like they're being discriminated against, that they're being punished for making sure that their science is up to date and for making sure that they can detect new variants. [END CLIP]
BROOKE GLADSTONE President of South Africa Cyril Ramaphosa.
PRESIDENT RAMAPHOSA The only thing the prohibition on travel will do is to further damage the economies of the affected countries and undermine their ability to respond to and also to recover from the pandemic. [END CLIP]
BROOKE GLADSTONE Some outlets didn't even credit the researchers in Hong Kong, Botswana and South Africa, who detected and shared the news about Omicron.
JEREMY KAMIL The very first reports in the news that came out were in the Guardian and Newsweek, and they failed to mention any of the names of the researchers who discovered the variant who did the work. Sequencing the viruses, collecting patient samples.
BROOKE GLADSTONE Jeremy Kamil is associate professor of microbiology and immunology at Louisiana State University Health Shreveport.
JEREMY KAMIL They failed to even mention that this data came from the GISAID sharing community, which has been getting this really important data to save lives to flow from places like Brazil, from places even like Iran or countries that don't get along with the United States very well, like Russia. Those countries also share via GISAID, and they share rapidly, and we are one humanity, whether we like it or not. These viruses show us time and time again that they don't really have much respect for borders. They'll make you sick and they'll kill you.
BROOKE GLADSTONE But what difference does it make? Whose name gets checked in an article? Given the stakes here, why should we care?
JEREMY KAMIL If you don't recognize those who provide something valuable to humanity, in this case, giving vaccine makers a head start, saving lives, producing that new recipe that's going to protect you from Omicron. Then there's a very significant risk that that work won't continue happening because the people who are doing it aren't going to get the acclaim that they deserve in their countries. And so the people above them are going to say, Hey, you shared this data from our universities effort funded by these mechanisms in our country. Yet all the acclaim is going to a researcher in San Diego or someone in London or Cambridge, England, and instead of us getting credit for it, we've got rewarded with the travel ban. So now the prime minister and the public are angry at us and our funding agency who gets money to support your work is having its budget cut because of the travel ban. So all this sharing is just punishing us and then the neighboring countries that are just learning to sequence and detect new variants sooner. Their political leaders are going to say 'stop it.' Sequencing creates variants and travel bans. It doesn't do anything good for us. And then what happens is a lot like what happened with Delta. It took months to find out that there was a new variant. If folks in India or whatever region around India where it may have first emerged, we know it is probably Southeast Asia, the virus emerges and spreads very far, and there's a long latency. So some researchers maybe sequence it and then they keep the data on their computer. They're going to put it into the public domain at some point, but they're going to wait to get their paper accepted so that they get formal recognition for their work and in a public health emergency, that's a recipe for disaster.
BROOKE GLADSTONE So in the coverage of the Omicron variant, compared to say, Alpha, which was first detected in the U.K. The U.K. scientists and researchers got credit, but in this current case, you mentioned the public health researcher in Hong Kong, Alan K. L. Tsang. You've also talked about others who have played a key role and didn't get credit. Dr. Moyo and his team in Botswana, you say, played a key role, and De Oliviera in South Africa also played a huge role. But particularly the South Africa team have been getting the blame for the variant. What's the nature of the blame?
JEREMY KAMIL It's just a typical protectionist response. Political leaders are probably afraid that they'll be voted out of office. You know, what did you do to prevent this variant from getting here, and we often see a double standard. I mean, cases have now been announced in England and Germany, and you hear their leaders talking about how we have it contained. We don't need a travel ban in Europe and oh, it's already here. So don't worry, but they aren't talking about removing the travel ban against South Africa or Botswana.
BROOKE GLADSTONE Mmhmm.
JEREMY KAMIL You know, there are probably special circumstances where a travel ban would make sense. But we are about two years into this pandemic and we've had time to develop tests. We've had time to develop vaccines, and we really need to think about the cost benefit of punishing countries who released data quickly because it's very likely that this variant did not start in South Africa or Botswana. It likely started in some other under-vaccinated areas of Africa, and we failed as a global community, especially the wealthy countries in the global north, to share our vaccines with countries in Africa and other lower and middle income countries in Latin America and Southeast Asia. And that's let the virus run rampant there, and we know that when the virus gets into, say, an immunocompromised person and there's a lot of cases of HIV/AIDS, sadly, in sub-Saharan Africa that are not well treated or treated at all. So when the virus gets into people who have decreased immunity, it can sit around for a lot longer time and persist. The immune system comes on slowly and weakly. And so the virus has a more comfortable training camp to develop a countermeasure against, say, an antibody that neutralizes the spike. And so we see an example of many different changes that accumulated. Another theory is that Omicron evolved in maybe some kind of animal reservoir and spilled back into humans from those animals. We do know this coronavirus spilled really easily into mink and in North America into white tailed deer. There may be some species of animals in Africa that were infected, and then it spilled back into, say someone who interacted with an animal in some way or another. But in any case, we don't know that this virus actually emerged in these countries that we're punishing. We just know that these are the countries that share the data rapidly and are doing a good job sampling people in their communities. Sequencing the virus that's making them ill and sharing that data with the world. And you know, there's that saying no good deed goes unpunished, and I think this is a very good example of that.
BROOKE GLADSTONE Can you give me an example of what happens when researchers don't get credit for their work or face backlash for their discoveries?
JEREMY KAMIL I look at a country like India. The history of how they've been treated by Great Britain in Europe has made that country very protective of data that comes from India, and so their government has a culture of being very protectionist and ensuring that there's significant benefit that comes back to India if they release data and that if they generate data that all the collaborations are within India. And the researchers there that I've spoken to, they really want to work with researchers in the West, they do tell me, be aware that our hands are a little bit tied. We don't give away Indian data to Western researchers. That reaction is there for a reason, and it came from how they were treated for decades. It causes significant risk to us in the context of where new viruses come from. We know that new variants of Ebola don't crop up on the Harvard Medical School campus in Boston. They don't crop up on the campus of Oxford in the UK. They tend to crop up in places that are off the beaten path that are former colonies, places like Botswana. I mean, it's great to have someone from Oxford or the excellent Christian Anderson from the Scripps Research Center help us understand evolutionary theory of these viruses, and there's definitely a place for Westerners to chime in. But we do have to give credit where it's due. We really do. If you want to keep seeing these data, it's just critical. There's hundreds of stories where people and former colonies or poor countries were in essence totally disregarded and swept aside, both in the scientific literature and the media coverage. And it's literally writing their names out of history. And it's really sad and destructive thing. And I think in the pandemic, it couldn't be clearer that there's a real cost and risk that you can count in human lives. I mean, imagine if we didn't know about Omicron, we didn't have GISAID, we didn't have Sikhulile Moyo, we didn't have Tulio de Oliveira, we didn't have Alan Tsang in Hong Kong. Moderna and BioNTech would be two or three weeks behind in updating their vaccines. Those are two or three weeks slower that we're going to have shots in arms of the most vulnerable people, even in our rich countries that we've been so selfishly successful at protecting. So it should be in our latent self-interest to address this problem, starting out by acknowledging the people who do. A work.
BROOKE GLADSTONE Jeremy, thank you so much.
JEREMY KAMIL Thank you for having me on.
BROOKE GLADSTONE Jeremy Kamil is Associate Professor of microbiology and immunology at Louisiana State University Health Shreveport. For a full list of the researchers in Hong Kong, Botswana and South Africa who swiftly shared their data on the Omicron variant. Go to onthemedia.org. There, you can also find our latest Breaking News Consumers Handbook: Variant Edition, all on one printable page and all the other breaking news consumers handbooks too.
Coming up, most of us are actively engaged these days in avoiding death, but some seek it and find it quite literally out of reach. This is On the Media.
BROOKE GLADSTONE This is On the Media, I'm Brooke Gladstone.
780,000. That's the latest COVID death count to dominate a headline in the U.S. Over the last 22 months, we've seen a steady trickle of these morbid milestones in the news. They're one way to measure and try to understand the COVID-19 pandemic. In the world of journalism, death is a metric. It's important. It indicates significance, newsworthiness and tragedy. But death is also an inevitable part of the human experience. This is a fact that Katie Engelhart highlights in the title of her new book The Inevitable: Dispatches on the Right to Die.
KATIE ENGELHART You know, when country set eligibility criteria for assisted death are effectively creating a set of philosophical norms around who deserves and who doesn't deserve to die. And the United States has created a very narrow set of laws. In other places, we see the laws are open to say people with dementia to people with mental illness, to people who are getting older and don't want to grow very, very old. So there's different ideas of what the law can look like.
BROOKE GLADSTONE Katie Engelhart is a former NBC and Vice News journalist. In her book, which came out last month, she focuses on the stories of six people who are seeking physician-assisted death. Katie, welcome to the show.
KATIE ENGELHART Thanks so much for having me.
BROOKE GLADSTONE What got you started on this fraught topic?
KATIE ENGELHART I was working as a staff reporter in London, and I was assigned to cover parliamentary debate in Britain about whether or not to pass right to die legislation. You had people arguing that right to die laws allowed for patient autonomy and dignity at the end of life. On the other side, you had people arguing that there would soon be a slippery slope, and if we passed these laws, vulnerable people would be coerced into premature death. In the end, the British government didn't pass the law, but it was in the course of reporting that legal story that I realized there were many people in Britain and beyond who weren't waiting for legislators to pass laws. Euthanasia advocates and euthanasia seekers who were making things happen. That got me started on really a 5 year reporting journey. I had this sense of squirming in my role as a reporter all the time.
BROOKE GLADSTONE So is that why you ordered the book, with the profiles becoming increasingly more morally ambivalent as you went. Starts out cut and dried – and gets pretty murky?
KATIE ENGELHART Yeah, because I wasn't sure that what I was seeing or what I was doing was correct or decent or safe. I wanted readers to feel the same way. So as you said, you know, the book opens with a what we might call a fairly straightforward death. I was present for the legal assisted death of a man in California, 89, prostate cancer lived a great life. His three children were supportive. They were holding his hands while he died. If he hadn't had an assisted death, he probably would have died within a week anyway. And I think a lot of readers heard that story and were moved by it, but thought this makes sense. This person's death is reasonable and rational.
BROOKE GLADSTONE Give me an example where it gets murkier.
KATIE ENGELHART Yeah. So I spent a number of months with a woman named Debra, who lived in Oregon on the coastline. Deborah had been diagnosed with early moderate dementia. Her husband had recently died. She had this nightmarish vision of ending up in a nursing home, being mistreated, or at least cared for in an unloving way, unable to advocate for herself or even understand how and why she was hurting.
BROOKE GLADSTONE Mhmm.
KATIE ENGELHART Deborah ended up connecting with some right to die activists who taught her a method for ending her life peacefully and painlessly, she was told. She did take her life. I spoke with her a couple of hours before she did. There were tricky aspects to Debra's story. She was doing pretty well. She constantly searched for evidence of her decline, but had months or years of independent life ahead, according to her doctors. Also, there were things that had nothing to do with dementia motivating her decision. She was very clear that she wanted to die before she lost her home. When I read newspaper articles about the right to die, you know, I never see money mentioned. I never see family drama mentioned. These things complicate the story, and Debra's story was certainly very complicated. And I think there's so much obfuscation in euphemism.
BROOKE GLADSTONE Which euphemisms bother you the most?
KATIE ENGELHART Talking about assisted death, I never used death with dignity. You know, the Republican Party a few years ago had a platform item talking about the dignity of life in which they recommitted themselves to opposing assisted dying law. On the other hand, you know, advocates talk a lot about assisted dying as a way to preserve dignity. I think that both sides are guilty of creating a setup whereby some deaths are somehow not dignified, and I don't think that's correct. People, often their first response to me was, I want an assisted death because I want my death to be dignified. I'd say, 'What does that mean?' I expected, from these dying people, some sort of transcendent wisdom. I found a majority of people I spoke to, equated dignity pretty closely to sphincter control. For them, that was a pretty clear line. And a lot of people told me that they planned to end their lives when they found themselves losing control of their bowels.
BROOKE GLADSTONE What are some of the most common misconceptions about physician-assisted suicide or euthanasia laws?
KATIE ENGELHART First of all, my impression is that in the United States, people really have no idea what's legal and what's not, and they don't really know how a person is actually made to die. Also, people misunderstand how narrow the laws are. About 20 percent of Americans live in a place where they can access assisted death. But to qualify, a patient needs to be terminally ill within six months of a natural death in the opinion of two doctors, and they need to be of sound mind at the time of their death. Oftentimes, critics of the law exploit what people don't know, and they say these laws will expand and expand. And soon you'll have poor people and old people being lined up at euthanasia clinics, and that's not true at all. We have many years of data from places like Oregon that show that actually it's primarily older cancer patients who end up using this law.
BROOKE GLADSTONE Let's talk about the coverage. You wrote, 'the push to wrest bodily control at the end of natural life from the behemoth powers of big medicine in the state, have been defined by individual stories. Generally of white women whose personal end of life tragedies become talking points and turning points in a larger political crusade for patient autonomy.'
KATIE ENGELHART Yeah, I think what we would call the patient autonomy movement began here in the US in the 80s and 90s with these very public stories all involving younger women who, because of some accident or substance abuse, ended up in a state where their bodies were still functioning with machine assistance but effectively dead to the world. In the case of Terri Schiavo, for instance, there was a dispute within the family, parents versus husband over whether those machines should be withdrawn and the body of Terri Schiavo be allowed to die. This is a drama that was seized on by the religious right. George Bush ended up getting involved. A feeding tube was inserted and then taken away and then reinserted, and in the end, Terri Schiavo did die in hospital. And I think that the Terri Schiavo story and the others too, got people thinking about what they would want to have happen to them if they ended up in such a situation. You know, in the mid 20th century, certainly it was common practice for doctors to not tell patients that they had cancer. It was thought that that would lead to a loss of hope, which would be very dangerous for the patients chance at recovery. Now we see a lot more transparency. We see patients react against this American trend to treat, treat, treat. Say, a breast cancer patient who decides not to do that second round of chemo that probably won't work, and instead to go home and spend a peaceful final few months with her family.
BROOKE GLADSTONE So the coverage has created questions. But who's winning this argument?
KATIE ENGELHART I think coverage of this issue has generally been quite weak. In general, I think the subject is hugely underreported. When we do have news articles about proposed assisted dying legislation, articles might say opponents of the law worry that once the laws are passed, people with disabilities will be pressured to have assisted deaths. Well, we actually have a quarter century worth of data from Oregon and many years worth of data from other states, and we know that that has not come to pass. Most of the coverage that I read fails to mine that data, which is actually very good and very easily accessible. Most people who access the law are white, educated, have insurance. They're not a patient group we typically worry too much about when it comes to coercion or neglect.
BROOKE GLADSTONE You've talked to people in the disability movement. What was your experience in those conversations?
KATIE ENGELHART A number of large disability rights organizations in the United States have opposed assisted dying legislation. Informed by a very real history of not receiving adequate medical attention, of being subject to all sorts of bias and sometimes abuse. Someone from an organization called Not Dead Yet, he talked to me about, you know, the typical patients who do choose assisted dying. And he said to me, Why are they? You know, I'm paraphrasing here, but why are they choosing to die? They're choosing to die because they fear being dependent on others. Needing help with things like going to the bathroom and showering. Losing mobility. So effectively, we're allowing people to die because they're becoming disabled and they don't want to be. And he sees that as a very dangerous situation. But a person with, say mobility related disability would not qualify to die under the law in any American state.
BROOKE GLADSTONE It has to be a progressive situation like someone with ALS will be disabled at some point, but they'll be dead at some sooner point than someone who was born with a disability and has lived with it their whole life.
KATIE ENGELHART Exactly. And of course, it is true that doctors aren't always terribly good at predicting how long someone has to live, and the six months mark is arbitrary. You know, I met a lot of patients who were really frustrated by that limitation. One of the chapters of my book follows a young woman with multiple sclerosis, you know, over several decades probably will lose a lot of her physical capabilities. She would like to access the law, but she can't because she could live 10 more years, and she at some stages has been quite envious of people who have a more rapidly progressing disease like ALS, who may qualify for the law because their doctors are able to predict with more certainty the time is nigh.
BROOKE GLADSTONE Some have argued, within the disability movement, that access should be expanded until disabled people can actually qualify.
KATIE ENGELHART Yes, disability does play into both sides of the debate. In the United States, assisted dying laws require that patients ingest a lethal cocktail on their own. They can't have a physician inject them. They can't have a physician pour medication down their throat, they have to take the medication themselves. Meaning that some patients can't qualify, not because they don't meet the basic eligibility criteria. They're dying, they're going to die soon, but because they can't physically lift a cup of medication to their lips. And so some of these people have argued that the law discriminates against people with disabilities. We have a situation in states where someone say with breast cancer might qualify for the law, but someone with a brain tumor wouldn't qualify just because he can't move his hands. So we're privileging the suffering of one patient over another just because of where the tumor lies in their body.
BROOKE GLADSTONE You've noted that the voice of the right to die movement is frequently the voice of doctors.
KATIE ENGELHART You know, I think there's something very predictable about the way that assisted dying is covered in the U.S. Most of the stories are communicated by doctors, even when a patient's voice is heard, I mean, they're just very sanitized and uncomplicated. Most news articles start with a very sympathetic character, say a woman in her 70s who's got diagnosed with this terrible cancer, and she fought it valiantly, but she realizes that she can't win and she is choosing to end her life. Doctors come and we interview someone who believes that there'll be a slippery slope and then it's over. A lot of times journalists are introduced to these patients by organizations that promote assisted dying, and sometimes those people have been given media training beforehand. I'm not suggesting that these patients are acting as mouthpieces for lobby groups or that they're not genuine in any way, but the stories have sometimes been pre-selected and they're very on message. The news articles, as a result, tend to explain assisted dying as a purely medical choice. The stories that I reported were a lot messier.
BROOKE GLADSTONE Yeah, finances figure in a lot more than we ever hear in those news accounts
KATIE ENGELHART Family drama or religious guilt or spite. Like, if I died, my father would know that he should have listened to me when I said I wanted to die. I mean, people are messy. People misunderstand their medical histories and their prognosis. People with cancer sometimes have mental health issues too the impact, their choice, depression, anxiety, and I think that's really been missing from the debate. When states like Oregon do record information on assisted dying, it's always information that comes in forms that the doctors fills out. There's a checkbox, if if money is motivating the patient, you know, it's never, never checked. Well, who talks to their doctor about money problems, especially a doctor you don't know that well. And so I think it's obvious that we'd get skewed data in that sense. It's America and a health care issue. Of course, money is involved. Of course it is.
BROOKE GLADSTONE You noted that it's really hard to get access to some of the best drugs because the prices are so high.
KATIE ENGELHART Yeah, this is sort of a wild history. When Oregon and other states first legalize assisted dying, doctors tended to prescribe a barbiturate called pentobarbital. Patient would drink it. Breathing would slow, probably over the course of 20 minutes, and then she would die. Problem was that pentobarbital was manufactored in Europe, eventually, the European Union put an export ban on the drug to the United States because governments there found that the drug was sometimes being used to execute patients on death row. Of course, pretty much every country in the world opposes capital punishment, and so the EU made this decision. Doctors ended up switching to another barbiturate, but that drug was acquired by a Canadian pharmaceutical company, which racked up the prices. Patients who wanted to have an assisted death were sometimes paying up to $5000, not subsidized by insurance. A few years ago, a couple of doctors in Seattle got together in a conference room and decided they were going to figure out some cocktail of drugs that would peacefully, quickly, reliably, end the lives of their patients. They actually brought in a veterinarian who had experienced euthanizing animals to consult with them.
BROOKE GLADSTONE This is a wild story.
KATIE ENGELHART Over the course of the weekend, they came up with this cocktail included respiratory drugs and cardiac drugs that they figured would work. It had the added advantage of being something that a compound pharmacist, so a specialized pharmacist could put together, meaning that these doctors didn't have to go to the FDA for approval. Compound drugs don't need FDA approval in the same way, so they didn't need to do years of testing. They could just start using it. I talked to one doctor, she started prescribing the cocktail to her patients and sitting beside them as they died. Measuring their heart rates, monitoring times of death. Over the years, the drug has been tweaked, and it's the main cocktail that doctors use. But yeah, it was developed on the fly, and that's an interesting thing about these laws. They legalize a new form of dying into being, but they don't give the medical community any instruction on exactly how the death should be carried out.
BROOKE GLADSTONE What do you think about books like Final Exit: The Practicalities of Self Deliverance and Assisted Suicide for the Dying by Derek Humphry. There's also another one A Chosen Death: The Dying Confront Assisted Suicide by Lonny Shavelson. These authors can't be charged with assisting in suicide, can they?
KATIE ENGELHART Well, people are really fearful of dying badly. They want to know that something will work quickly and that it won't leave a mess for family members to find afterwards. And that's what these manuals help people with. The book Final Exit was a surprise New York Times bestseller, I think, in the 90s. I contacted the author, and all these years later, he still sells a couple of copies a day, and he still gets calls from people all over the world who want to ask very specific questions about some say, cardiac medication they've been hoarding. As to the question of whether someone can get in trouble for sharing this information, that's actually pretty interesting. To commit suicide in the United States is legal, but to assist someone else in the legal act of committing suicide is illegal. And that brings us to the question of what constitutes assistance, which is complicated and vary state by state. So I did interview a lawyer who's involved in a group that helps provide people with information, and he'd done this big survey. And he basically found that in most places, when we say 'assisting a suicide,' the courts mean physical assistance. You handed someone medication, you injected someone with a drug, but in a few places, the definition is fuzzier and perhaps will allow for someone to be charged with assistance just for providing information or means. And this lawyer, Robert Rivas, said to me, if that interpretation is correct, it could be that in some states, someone could ask a librarian for a copy of this New York Times bestselling book Final Exit, have the librarian hand over the copy and later have the librarian be charged if that person goes home, reads the book and uses it to end his life.
BROOKE GLADSTONE Do you think that this moment is an inflection point for the right to die movement here in the U.S.?
KATIE ENGELHART I do. Every few years we see another state debate a right to die law. These laws are slowly being passed in new places. Most recently, you know, states like New Jersey. There's pressure being put on the American laws by right to die laws in other countries, which have much more liberal interpretation of what suffering at the end of life looks like. In Canada, for instance, a person doesn't have to be within six months of a natural death. They only need to be dying of something and suffering in a way that can't be alleviated and to them is unbearable. The Canadian law leaves it up to the patient to decide what unbearable suffering means. As of next year, the Canadian law will also be open to patients who don't have any physical illness at all, but are dealing with mental health illnesses and psychiatric conditions. So things like chronic depression, that's obviously very controversial, but proponents of that expansion in Canada have argued that we shouldn't privilege physical over mental suffering, and any patient who's suffering should have the option to die. I suspect that more and more we'll hear from people who are specifically worried about dementia and who would want some sort of option to end their lives if and when.
BROOKE GLADSTONE So where do you end up over this long journey you've been on? How far have you traveled and in what direction?
KATIE ENGELHART Yeah, I feel confident giving an opinion on American style right to die laws. I think they should exist in all places. They're very limited. Very few patients access them. The patients who access them go through an awful lot of trouble to prove that they are serious about their choice. So I think it would be just to expand access to these laws. I also have a sense that the laws as they exist in the United States are unfair. The practice that the laws go against their spirit, the idea that someone might be denied access to an assisted death simply because he has a condition that limits his ability to lift a cup of medication to his lips. That seems ridiculous to me. That seems inconsistent and unfair. I also think the six month criteria is very limiting and excludes a lot of people who are suffering very seriously, but who don't have a predictable course of decline.
BROOKE GLADSTONE What about loneliness, poverty, things that there are other ways to address?
KATIE ENGELHART Yeah. You know, I started out with the sense that people should be allowed to die. People deserve to die when there's nothing they can do to avoid it. So someone with cancer treatment has failed. They're dying. They deserve an assisted death. They have no choice but to die. If someone is lonely, well, surely we as a society can fix loneliness and so someone should not be allowed to die on account of loneliness. But we're not fixing loneliness, and people are lonely and people are suffering. So what we're effectively asking people to do is to hold on, to wait, to suffer in the service of, I don't know – the hope that over several years enough. Pressure will build such that there is a big social political revolution in the United States and we start to fund social programs differently and then loneliness is alleviated. I don't know. I think we're asking an awful lot of people by denying them access to the kinds of death they want when they want it.
BROOKE GLADSTONE Katie, thank you very much.
KATIE ENGELHART Thank you so much for having me on.
BROOKE GLADSTONE Katie Englehart is a journalist and the author of The Inevitable: Dispatches on the Right to Die.
And that's the show. On the Media is produced by Leah Feder, Micah Loewinger, Eloise Blondiau, Rebecca Clark-Callender and Eli Cohen with help from Juwayriah Wright. Xandra Ellin writes our newsletter and our show is edited by me and Katya. Our technical director is Jennifer Munson. Katya Rogers is our executive producer. On the Media is a production of WNYC Studios. I'm Brooke Gladstone.