A right-to-die ethicist faces her hardest choice

Peggy Battin spent most of her academic work exploring a contentious topic that many of us shy away from: decision making at the end of life. Peggy’s field of study took an almost unbearably personal turn when it became time for her husband, Brooke, to decide how to die following a near-debilitating cycling accident.

We reached out to Peggy, asking her to tell us more about what she thinks makes her TEDMED 2014 talk an especially timely one that can help us better understand the current debate over physician aid-in-dying. Here is her response:

Think about the competing tensions over how we die—on the one hand, the desire to be self-determining as much as possible, even at the very end of life, and on the other, the worry that giving people control over their own dying will leave them open to pressures, expectations, and abuse.

I want to be able to die when I want, where I want, with the people I love around me; but I don’t want to be pushed or cajoled or forced into it—not by family members or friends, not by overworked doctors, not by profit-motivated insurers.

Peggy Battin speaks at TEDMED 2014.  Photo: Jerod Harris, TEDMED.

Peggy Battin speaks at TEDMED 2014. Photo: Jerod Harris, TEDMED.

These tensions are fanned by activist groups on both sides. On the one side are the various right-to-die groups, like Compassion and Choices, the Final Exit Network, and many others; physician aid-in-dying, usually called Death With Dignity, has already become legal in four (and a half) U.S. states: Oregon, Washington, Montana, Vermont, and parts of New Mexico. Physician-assisted suicide and active voluntary euthanasia are also legal in the Netherlands, Belgium, Luxembourg, and Switzerland. There are active court cases and/or legislative measures in the United Kingdom, Canada, Australia, France, and much of the developed world.

Why must I be kept alive at such expense when, if I am dying, I would rather die in an earlier, easier, gentler way? That should be my basic right.

On the other side, opposing these measures on the grounds of both moral concern and fears of abuse, are a variety of groups implacably opposed to euthanasia in any form, from the disability-rights group Not Dead Yet to the Catholic Church.

But, you see, if there are such cost savings to be had, don’t you think you might be pressured into it? That’s what “death panels” are all about.

These tensions are further stoked by changes in background epidemiology and concerns over health care costs. The vast majority of people in the developed world now die slow deaths, deaths of heart disease, cancer, various forms of organ failure, the dementias, all of which have characteristically long downhill tail-off slopes, patterns of decreasing function that can also involve pain and suffering, and that also may involve substantial demands on family members and health care. As the populations of the developed countries become increasingly “gray,” this problem intensifies.

Against these tensions, this talk portrays one man’s life and the death that he chooses, a death that is on the border between these two camps: Because it involves the withdrawal of treatment, it legally and morally counts as a “natural” death, but because it involves this man’s own choice of time, place, and the people around him, including medical staff, it looks very much like an assisted death.

The Power of Play

In her TEDMED 2014 talk, Jill Vialet, CEO of Playworks, an organization that creates imaginative, inclusive school recreation programs, challenges us to release our inner child and remember that play matters to physical and emotional growth. She spoke with us via email about her talk and how play changes the paradigm of health and education reform.

What motivated you to speak at TEDMED?

I was excited to have the chance to speak at TEDMED because it was a great opportunity – and a great audience – for drawing attention to our societal ambivalence around play, despite the overwhelming evidence that it contributes to our health and well-being. There is a narrative in American life about what it takes to change things, and a resistance to ideas that don’t fit in with this narrative. The idea that play might be a part of the solution to America’s educational challenges simply doesn’t align with most people’s assumptions.

_C0A7227But recess is a part of the school day where the best and the worst things happen. It’s both an opportunity and a challenge hiding in plain sight, and when you ask most educators about it, they admit to having given it very little thought. While it is the most concentrated time in the day for experiences of bullying, it’s also an unparalleled opportunity to promote physical activity, inclusion and empathy. Speaking at TEDMED was a great opportunity to raise awareness that play matters – and in a broader sense, that changing systems requires attention to how it feels to be part of that system.

 Why does this talk matter now? What impact do you hope the talk will have?

This talk is important now because we are living in an age of health and education reform, and while the emphasis has been focused almost exclusively on what we do to rebuild these essential systems, too little attention has been paid to how we do it, and the importance of the environment in which the reforms take place. The demonstrable impacts of creating a more inclusive, playful environment, from helping kids feel safer to recovering instructional time, raise some important questions about what other undervalued and overlooked opportunities exist for building effective school environments and a culture of health.

What is the legacy you want to leave?

The legacy I hope to leave is a systemic awareness that play matters, reflected in thoughtful and explicit discussions around the importance of play any time we build institutions serving children and families. One of the most gratifying aspects of building Playworks over the past eighteen years has been in working with the young men and women – our coaches – who go out to schools to ensure that kids in our programs have access to safe, healthy play, every day. Through working with us, these coaches have discovered their own superpowers through the transformative experience of making a difference. My greatest hope is that these young leaders will take the experiences and skills they gained from working and playing with kids in schools, and apply them by being powerful changemakers for the rest of their lives.

Public Health’s Work on Infectious Diseases

Infectious diseases—and the treatment of infectious diseases—has been a common theme in the news recently, with almost 4,000 people now dead from an Ebola outbreak in West Africa. It was only yesterday that Thomas Eric Duncan, the first person to be diagnosed with Ebola in the United States, died in a Dallas, Texas, hospital.

Earlier this week, some of the leading experts in infectious disease came together in the Google Hangout “TEDMED Great Challenges: Track, Treat, Prevent—A Better Battle Against Communicable Diseases.” They discussed the risk of communication, treatment, drug resistance, disease tracking innovation and related ethical issues. The event was moderated by Helen Branswell of the Canadian Press.

The panelists—across the board—agreed that the recent Ebola resurgence has served to highlight the importance of public health. Not just what it brings to the table during such emergencies, but the need for it to focus even more on prevention efforts and ensuring public health is fully funded and supported.

“Public health funding is one of those things people only really notice when something goes wrong,” said Dara Lieberman, a Senior Government Relations Manager at Trust for America’s Health.

Amy L. Fairchild, PhD, MPH, Professor of Sociomedical Sciences at the Columbia University Mailman School of Public Health, believes that “in many ways, we’ve really lost our way in public health.”

“There was a period at the end of the 19th/beginning of the 20th century in which the field made these enormous strides in combating infectious diseases and combating communicable disease,” Fairchild said. “And then, with the rise of chronic diseases, we began to forget some of those…lessons learned about the need to focus on broad, sweeping environmental changes.”

Public health became focused on individual risk behaviors, she said, such as diet, exercise and smoking. The result was many in the field took their eyes off of the fundamental causes of disease.

“It’s not that those things aren’t important,” Fairchild said. “But the things that we’re going to be able to do as individuals are going to be far less consequential than what we can do from a more systematic perspective in public health.”

Ramanan Laxminarayan, a Research Scholar at the Princeton Environmental Institute at Princeton University, said the outbreak of something as serious as Ebola also serves to stress the importance of continuing to implement proven public health strategies, such as vaccinations for preventable disease.

“Even if disease burden is low, we need to keep the pressure on because it is that pressure that actually keeps infectious disease low,” said Laxminarayan. “If we stop vaccinating the world against measles today, for instance, it is very easy for measles to come back in a relatively susceptible population which is lacking immunity—and an explosive disease like that could kill millions.”

However, when it comes to diseases such as measles—which is one of many infectious diseases that have been declared eliminated in the United States—it can be difficult to communicate the need to continue receiving vaccinations.

“Prevention is going to be challenging because the consequences of prevention are not always obvious or apparent to folks who’ve never even seen that disease in their lifetimes,” said Laxminarayan.

Also, a considerable part of the role of public health professionals when responding to an infectious disease outbreak is managing the public’s reaction and understanding. Lieberman said that includes balancing the needs of those affected with the need to contain a situation.

“I think public health in general takes privacy and individual rights very seriously. At the same time, you just need to balance that with the practical need to protect the public from an infectious disease and from a highly dangerous disease,” said Lieberman. “So you can imagine if public health never knew who the individual was in Dallas, Texas. If that was just a privately treated person and public health didn’t get involved, then they wouldn’t have been able to investigate where he has been and who he’d had contact with. And it could have become a much wider spread outbreak (sic), so there is a need to weigh those two issues.”

When it comes to panic during an outbreak, Fairchild believes that it’s important to understand that panic can also bring about positive reactions.

“Panic is the language of action. When you hear panic in the air, you hear people talking about the need to take action,” said Fairchild. “And so it’s either a prompt to do something more—to beef up the infrastructure in West Africa, to beef up the response in the United States—or it’s a critique. It’s a critique we aren’t doing enough.”

One tactic that has been proven to be a boon for public health efforts has been the online tracking of people’s interest in, and concern over, different health issues. According to Christian Stefansen, a researcher at Google, today when a person is feeling “under the weather” their first action taken is often to log online, where they search for information about their symptoms. In 2008, Google launched Google Flu Trends, which continually looks at what people are searching for online and builds health model than can help public health experts get out in front of an issue.

Reprinted with permission from the Robert Wood Johnson Foundation’s New Public Health blog.

Track, Treat, Prevent: A Better Battle Against Communicable Diseases

A Live Online Event: Tuesday, October 7 @12pm ET/9am PT

shutterstock_171831098Join us for the continuation of the Great Challenges Google+ Live Online Event Series as we discuss “Making Prevention Popular” in the context of infectious diseases. We’ll have some of the nation’s leading experts on infectious disease to discuss risk communication, treatment, drug resistance, disease tracking innovation, and related ethical issues.

The diseases may change, but the news is the same: The medical community continues to work on the best ways to track a communicable illness, control exposure, treat as appropriate, communicate risk and inspire behavior change. Are there new and better ways to prevent the spread of communicable diseases? How can we strengthen understanding and partnerships around prevention, including larger roles for patients, individual providers and communities.

With dangerous, sometimes deadly viruses and infections – such as Ebola, enterovirus D68, and MRSA – making their way through populations, our fight against these diseases has also taken center stage politically. Just last month, President Obama signed an executive order to create a task force that will develop and implement a five-year plan to prevent and contain outbreaks of infections caused by antibiotic-resistant bacteria and to create new, more effective tests, antibiotics, and vaccines. What might such a plan look like, in five, ten or 50 years?

Click here to RSVP, and be sure to kick off the conversation today by tweeting your questions and comments and tagging them #GreatChallenges – we’ll address as many as we can on air. To learn more about the Great Challenges program, click here.

We’ll see you online!

TEDMED Speakers: Exploring the Weird and Wonderful

TEDMED 2014 is less than two weeks away! We’re excited to highlight the second to last session and its speakers, who will be part of TEDMED 2014 this September 10-12 in Washington, DC and San Francisco, CA.

Sometimes, progress happens unexpectedly – in ways you’d never looked for and may not even be able to explain. This session’s wildly creative thinkers will be sharing stories of “Weird and Wonderful” discoveries that came out of the blue, defied expectations, and achieved remarkable results.

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Explore our stage program for more details on these and other speakers – and don’t forget to keep up with TEDMED by following @TEDMED on Twitter.

The Upside of Human Nature

From our primal instincts to the unfolding mysteries of how our complex brains evolved and work, humans are amazing and often unfathomable creatures. But if we don’t yet understand everything about ourselves and our surroundings, it’s not for want of trying. Scientists, artists, clergy, and indeed all of the curious among us haven’t given up trying to discern what makes us tick.

This session of TEDMED will explore what we’re learning about the human body and our inner worlds, what elements aid our bodies’ ability to heal, and how what we think of as our external environment is critical to our well-being and, in the end, is a large part of who we are.

Join us September 10-12 as these speakers, and many others, help us unlock imagination in service of health and medicine.

Art of Motion Dance Theatre
Modern Repertory Dance Company
Drawing from contemporary and classic legacies, as well as from yoga and eastern philosophies, AOMDT creates vital works inspired by earthly and imaginary worlds.

Julian Treasure
Sound Evangelist
Julian Treasure is chairman of The Sound Agency, a consultancy advising worldwide businesses on how to design with sound, especially in public or branded spaces.

Mariana Figueiro
Illumination Researcher
Brazilian-Cuban architect and scientist Mariana Figueiro researches the effect of light on humans, including alertness, performance, and cognition.

Jeffrey Karp
Bio-Inspired Innovator
Canadian Jeff Karp’s research focuses on stem cell engineering, biomaterials, and medical devices inspired by nature.

Emery Brown
Anesthesia Neuroscientist
Computational neuroscientist and anesthesiologist Emery Brown explores one of medicine’s big mysteries—exactly what happens to your brain under anesthesia?

Uzma Samadani
Brain Trauma Detective
Uzma Samadani is cofounder of Oculogica, a neurodiagnostic company specializing in detecting brain injuries using a non-invasive, bedside eye-tracking technology.

Debra Jarvis
Irreverent Reverend
For writer, ordained minister, and hospital chaplain Debra Jarvis, humor is a powerful balm, even for the sick and dying.

Zsolt Bognár
Concert Pianist
Concert pianist Zsolt Bognár, who frequently performs on NPR and has garnered critical acclaim, will perform a work by Schubert.

Tiffany Shlain
Interconnected Filmmaker
The work of filmmaker, author, artist, and Webby-awards founder Tiffany Shlain catalyzes deep thought about the future and how we want to live it.

Jen Hyatt
Global Social Entrepreneur
Jen Hyatt is the founder and CEO of Big White Wall, a digital behavioral health service including peers, professionals and evidence-based third party providers.

Peggy Battin
End-of-Life Ethicist
Philosopher and bioethicist Peggy Battin has worked for decades to defend the right of terminally ill individuals to have greater control over the timing and manner of their deaths.

Inspector Gadje
Balkan Brass Band
With up to 15 musicians, San Francisco-based Inspector Gadje brings a big sound to the beautiful and bumpin’ brass band music of the Balkans.

Click here to see the entire TEDMED 2014 stage program, and here to join our event – just 16 days away! – in Washington, DC or San Francisco, CA.

Stay up-to-date by following @TEDMED on Twitter.

TEDMED Speakers on the Power of Play

What do kids have going for them that adults could co-opt for innovative progress in health and medicine?

The “beginner’s mind,” for one, meaning a lack of preconceptions; an ability to stay with the moment; an attention to meaningful life details and the ability to daydream fruitfully. Kids enrich these powers through play.

It’s a good thing that playing is not limited to childhood. In fact, speakers in this session of TEDMED 2014 will reveal the extraordinary power of play for all ages – to fire up creativity, learn through hypothetical experience, and even strengthen brain connections.


Cole Galloway
Pediatric Motor Learning Scientist & Designer
Neuroscientist and physical therapist James “Cole” Galloway thinks differently about the role of self-motivated mobility in shaping who we are in early life.


Gerardo Contino

Cuban Musician

Gritty, witty and streetwise, the Havana-born Gerardo Contino, “El Abogado de la Salsa,” sings timba—a progressive, raucous style of salsa.


Jill Vialet
Recess Champion
Jill Vialet, founder of the non-profit organization Playworks, believes in the power of play to bring out the best in every kid.


Kayt Sukel

Edgy Science Writer
Kayt Sukel tackles interesting and often taboo subjects in her writing, including love, sex, out of body experiences, and adventurous single mother travel.


Carla Pugh
Haptic Educator
Surgeon and education pioneer Carla Pugh wants doctors to fine-tune their haptic skills as a standardized part of their clinical education and daily practice.


Rupa & The April Fishes

Rock Star Hospitalist / Rebel Musician
Rupa & The April Fishes seek to celebrate beauty in pluralism and reinvigorate appreciation for living music with their diverse, global sounds.


Howard Rose

Health Games Designer
Howard Rose is president of Firsthand Technology, which specializes in real-time, interactive 3D games that aim to revolutionize how people learn, work and play.

Click here for details on this session and others, and to find out more about the many intriguing and playful activities at TEDMED 2014.

Apply today
to attend this September in either Washington, DC or San Francisco, CA. Stay updated by following @TEDMED on Twitter.

TEDMED Stage Program by the Numbers

Numbers2

As we count down the days until TEDMED, we present a numerical look at the speakers for TEDMED 2014.

Some fun facts:

This year, we’re particularly proud that 45 of our speakers – 51 percent – are women.  As we ramp up to an eventual global presence, we’ve invited speakers from 20 nations and five continents.

They also represent a wide variety of interdisciplinary brilliance:  22 MDs, 26 PhDs (10 overachieving MD/PhDs and one hyper-overachieving college dropout), lawyers, architects, economists, journalists, entrepreneurs, an extreme athlete, acrobaticalists, global musicians, comedians, actors, dancers, photographers, and a man who gets a lot of mileage out of his pink tutu.

TEDMED Speakers: Tackling the Taboo

We’re just a few weeks out from TEDMED 2014! Next up – we’re sharing details on “Don’t You Dare Talk About This,” which will be presented on Day 2 of our bi-coastal event. You can’t solve a problem if you refuse to talk about it; to accelerate progress, we need to discuss controversial issues that may make us uncomfortable.

Session 5:  Don’t You Dare Talk About This

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This line-up of inspired risk-takers may just change the way you think and talk about the world’s most taboo health and medicine topics.

Learn more about these and other TEDMED 2014 speakers by exploring our stage program, and apply to attend today. Stay up-to-date by following @TEDMED on Twitter.

Later this week, we’ll be outlining our next session, “Play Is Not a Waste of Time,” about the extraordinary ways play can enhance health and medicine.

Meet the Final 11 Hive Startups

Last but not least, today we unveil the final 11 startups that we will welcome into The Hive at TEDMED this September 10-12 in Washington, DC, and San Francisco, CA. The companies we introduce are improving healthcare outcomes and the patient experience by making information available and accessible, regardless of geography or technology.

We’re very excited about this year’s Hive members – get familiar with these and all the startups joining us on TEDMED.com.


AdverseEvents aims to increase patient safety and reduce healthcare costs by providing easy access to comprehensive drug side-effect data.


CareSync‘s combination of applications and services lets patients share their healthcare information and collaborate with families, care teams, and providers in managing their health.


i-Human Patients‘ cloud-based e-learning solutions are like flight simulators that help healthcare professionals and students develop critical, cognitive competencies to make appropriate interventions and treatment plans.


MediSafe‘s data-driven Medication Management Platform is designed to improve patient outcomes and reduce expenses throughout the medication distribution chain by creating better patient engagement and medication adherence


NextGxDx is expediting genetic testing for patients with an online marketplace and HIPAA-compliant platform that allows healthcare providers to search, compare, order tests and receive results electronically.


PillPack delivers personalized rolls of pre-sorted medications to make it easy for people to take the right medication at the right time.


Pristine‘s flagship product, EyeSight, is pioneering the delivery of telehealth via Google Glass to break down physical and geographic barriers to accessing medical expertise.


SafeUseNow has developed an analytical software to model patient, prescriber, and pharmacy behavior in order to manage risk, fight fraud, combat waste, and decrease the abuse and misuse of prescription drugs.


Smile Train leverages technology to provide training and funding to empower local doctors in more than 85 developing countries to provide free cleft lip and palate repair surgery for children in their own communities.


Tiatros uses social media technologies to put patients at the center of their own Personal Health Networks, surrounded by care providers, family members, and other stakeholders to make healthcare better, safer, less costly, and more easily accessible.


VoiceItt‘s personalized speech recognition technology enables people who suffer from motor, speech, and language disorders to freely express themselves and be understood in any setting, using mobile and wearable devices.

Also, meet Zen Chu in our latest interview with the thought leaders who curated this year’s Hive. Chu is Healthcare Entrepreneur-In-Residence at MIT, co-director of the MIT/HST Healthcare Ventures graduate course, and overseer of MIT’s Hacking Medicine initiatives. He also runs Accelerated Medical Ventures, where he serves as co-founder and first investor for several medical and software companies.

- The TEDMED Team