Pricey Technology Is Keeping People Alive Who Don’t Want to Live
Silicon Valley is coming for death. But it’s looking in the wrong place.
After disrupting the way we love, communicate, travel, work, and even eat, technologists believe they can solve the ultimate problem. Perennially youthful Facebook CEO Mark Zuckerberg and his wife Priscilla Chan announced last year a $3 billion initiative to obliterate human disease. Among his many crusades, Paypal co-founder and Trump advisor Peter Thiel aims to end mortality. (“Basically, I’m against it,” he has said.) Alphabet has a whole company devoted to curing this most intractable of inconveniences.
And they aren’t necessarily crazy to try. Since the 19th century, average life expectancies have risen for everyone (though not at equal rates) thanks to advances in science and technology. But over the past two decades, deaths attributed to inequality, isolation, and addiction have risen for both men and women without a college education in the US. In particular, as Princeton economists revealed today, white middle-aged men with a high school education or less, hit disproportionately by the Great Recession, are dying of despair. Well-heeled techies obsessed with life extension have little to say about these problems, suggesting a grim blind spot: Are they really trying to extend everyone’s lives? Or just those of people already doing great?
Solving these problems is hard, and made harder by the fact that the real fixes for longevity don’t have the glamour of digitally enabled immortality. “It turns out that technologies which extend, augment or otherwise improve human life are already here!” writes sci-fi author and futurist Paul Graham Raven in a take-down of what he calls “Retweet Transhumanism.” “You may have heard of some of them: clean water; urban sanitation; smokeless cooking facilities; free access to healthcare; a guaranteed minimum income; a good, free education.”
Silicon Valley sells the world the idea that it wants to make things better. It exists, the rhetoric goes, not just to make products but to make progress. If that’s the case, it’s focusing on the wrong things.
“It’s distressing sometimes to see the amount of effort—not just human effort but also the rhetoric—to develop stuff that turns out to be apps or toys for rich people,” says SUNY Polytechnic Institute historian Andrew Russell, an outspoken critic of the cult of innovation . “Saying ‘We’re innovating and that is by default making a world a better place,’ and then patting yourself on the back and getting in your Tesla and driving to your seaside ranch is missing the point.”
The harm here isn’t just that Silicon Valley is trying to solve the wrong problem, which wastes brainpower and resources. The focus on innovating away death sets a cultural tone that directs attention from answers that might actually help, like infrastructure or education. Russell says kids deciding what they want to be when they grow up aspire to become like the titans in Silicon Valley—risking that they’ll grow up wanting to solve the wrong problems.
‘What would it mean to design against despair or isolation or loneliness?’
As surgeon and author Atul Gawande explains in Being Mortal, funding improvements in palliative care—making people in extreme pain or at the end of their life more comfortable—would much more meaningfully address the problem of death. You make death less terrible and inevitable by making life less painful. Silicon Valley’s simplistic life extension arithmetic—you improve life by adding more years—glosses over the complicated social forces eroding or hampering the quality of life for so many people.
“What would it mean to design against despair or isolation or loneliness?” asks Russell. “I have to think that just making another social media messaging platform doesn’t get us there.”
If the titans of Mountain View and Palo Alto are serious about fixing the real problems in the world, they can’t just start a new company or make a new app. They should recognize their place as arbiters of culture and lead by example. A video game-style quest to end death may appeal to the techie imagination, but it doesn’t engage with real problems in the real world. Instead of chasing down death, Silicon Valley could try to help people whose lives are already in free fall.
These days, more people are working from home, shopping from home, and yes, even seeing the doctor from home. Last year more than a million people traded the waiting room for the comfort of their own couch—which sure beats thumbing through a sad collection of creased magazines.
Today, telehealth is touted as one of the chief ways to deal with rural residents left behind by hospital consolidation, as well as the 20 million new patients the Affordable Care Act brought into the health care system. Its value hinges on the premise that patients will use telehealth options instead of going to the doctor or the urgent care clinic. But a new study released today shows that people are using phone-a-physician services in addition to in-person visits, not as a substitute. And the result of the Uber-ization of health care is an increase in overall costs.
In April 2012, CalPERS Blue Shield started covering telehealth visits for their 300,000 insurance enrollees. Over the next year and half, 2,943 of them came down with a respiratory infection. Two-thirds of those cough-stricken Californians went straight to the doctor. The other third picked up the phone first, using the newly covered direct-to-consumer service offered by a telehealth company called Teladoc.
This seemed like good news—using Teladoc brought down the cost of the average bronchitis episode because patients avoided unnecessary testing and imaging. But when researchers at RAND, a public policy thinktank, looked at whether those calls replaced in-person visits over those 18 months, they found that happened less than 12 percent of the time. In the long-term, spending actually went up $45 per Teladoc patient. They weren’t going to the doctor any less frequently. “If you make something easier to access, people will use it,” said Lori Uscher-Pines, one of the authors of RAND’s paper, published today in Health Affairs. “That lower threshold means that people are using this as an add-on service.”
Patients who use telehealth on top of their normal health care visits add strain to an already overburdened health care system. RAND found that patients who used Teladoc tended to be younger, healthier, tech-savvy city dwellers—not the rural and elderly populations the technology is supposed to be targeting. And because the service takes place outside of the normal health care flow, the physicians on the other end of the line don’t usually have access to each patient’s health records, and the visit may not make it into the patient’s history. Health care experts call this “fragmentation.”
“Telehealth has to be integrated fully into a total care system,” says Mario Gutierrez, executive director of the Center for Connected Health Policy. “It can’t just be a one-off. That’s not health care.” He’d like to see telehealth move away from the convenience economy model where you only dial up when you’re feeling down and out. Instead, he sees a huge opportunity to use it to manage chronic disease and engage people in preventive care. That means embracing telehealth as an essential service, not an add-on.
A few institutions have a jump on this. The US Veterans Administration has reduced hospital admissions by 20 percent and costs per patient by $1,600 each year with its telehealth program. In the world of private health care, Kaiser Permanente leads the pack; last year more than half of its 110 million patient interactions happened online or over the phone.
When patients call or set up a video consultation through Kaiser’s web portal, they get a few options. They can schedule a call or appointment with their primary physician (which could take a day or could take weeks), or they can talk to an on-call emergency room physician right away. If they choose that option, they might get Dennis Truong on the other end, an ER doc who also leads Kaiser’s telemedicine and mobility efforts in the mid-Atlantic region.
Truong can pull up patients’ health histories, and he can easily transfer them to an urgent care clinic or a specialist within the Kaiser network. “An integrated system is the backbone of what telehealth should be for patients,” he says. “I can hand off their care to the next physician who sees them, whether that’s later today or a year from now. It closes the loop.”
Integration might be the gold standard, but not everyone in the telehealth industry is keeping up as well as Kaiser and the VA. In 2016 Teladoc recorded 952,081 virtual visits, up from 600,000 in 2015, and 300,000 the year before that. By 2020, the telehealth industry is estimated to be worth $34 billion. It could make a big dent in America’s overextended health care system, if providers and patients use it responsibly.
Truong, who trained in the emergency rooms of Detroit, spent his early days as a doctor treating people who treated the ER as their first and last stop for health care. Their records were incomplete, fractured. It made it hard to care for them. “We couldn’t get down to the meat and bones,” he says. “That’s how I feel about a lot of these companies. There’s no closing the loop.”
To do that, policy and technology can do a lot of the heavy lifting by providing coverage and incentives in the right places. But for telehealth to fully deliver on its promise, people have to start treating their health care less like an Uber you summon in a thunderstorm, and more like a car that has to carry you the next 500,000 miles.
Some people just want to die. Not because they are trapped by depression, anxiety, public embarrassment, or financial ruin. No, these poor few have terminal illnesses. Faced with six months to live, and the knowledge that the majority of those 180 days will be bad ones, they seek a doctor’s prescription for an early death.
Soon, terminal patients in California will have that option. Today, Governor Jerry Brown signed into law a bill that allows doctors to prescribe life-ending drugs.1 Not surprisingly, this is controversial. Proponents believe the law will save diseased people from the worst days of their prognoses. Opponents say the law violates the sanctity of life, and can be exploited by ill-meaning family, physicians, and insurance companies at the patient’s expense.
But there’s a third group who believe this debate misses the real problem: that the American health care system is just an all around miserable place to die.
In the 1990s, Dr. Jack Kevorkian’s name became synonymous with so-called assisted suicide. He argued, famously and flamboyantly, that patients should have the right to euthanasia if the suffering from age, disease, even mental illness overwhelmed their will to live. “The patient’s autonomy always, always should be respected, even if it is absolutely contrary, the decision is contrary to best medical advice and what the physician wants,” he once said in court.
Kevorkian lost his court battles, and spent eight years in a Michigan prison. But his fight was not in vain. Four states have since legalized physician-aided death (and would-be fifth New Mexico has a law in legal review). The first was Oregon, and its Death With Dignity Act has become the model for the rest. There the patient must first have a six-months-to-live prognosis. Then, the patient has to write a request to the physician (who may refuse on moral grounds). Two witnesses have to sign that request, one of whom is not related to the patient, not in the patient’s will, and not the patient’s physician or an employee of the patient’s health care facility.
If the first doctor approves the request, the patient has to give it to a second doctor, who examines medical records to confirm the diagnosis and make sure the patient has no mental illnesses that might affect his or her decision-making ability. After a fifteen-day waiting period, the patient has to confirm that he or she still wants the doctor’s aid in dying. Only then will the doctor prescribe the lethal prescription. And the patient is under no obligation to take it, either.
In fact, since it was passed into law, only about 65 percent of the 1,327 people prescribed the medication have used it.
Raising the stakes in California
On December 31, 2013, California resident Brittany Maynard had a master’s degree in education, several years of experience teaching abroad in orphanages, and a husband. On January 1, 2014, she had stage two brain cancer. She went through surgery, and the doctors cut away the cancerous parts of her brain. But in April, the disease returned. Stage four glioblastoma, with little hope of treatment. Her doctor informed her she had six months to live.
Given the choice, Maynard said she would rather die before the cancer’s debilitating final stages destroyed her health completely. A few months later, she moved from California to Oregon.
Maynard took her lethal dose of medication on November 1, 2014. Her last message, posted on her Facebook profile, read:
“Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me … but would have taken so much more.”
Maynard’s broadcasted decision put the public behind California’s bill. Like the other states’ laws, it is modeled after Oregon’s, with some some add-ons meant to assuage opponents. California patients will have to request aid in dying three times instead of twice. “The physician who prescribes the medication must have a one-on-one conversation with the patient, to verify that it is their choice, and that no one is putting any pressure on the patient,” says Ben Rich, a lawyer and expert in end-of-life bioethics, from the University of California, Davis. And after ten years, the law will expire.
Missing the point
But for some in the palliative care community—the doctors, nurses, and caregivers that manage end-of-life care—the battle over aid in dying is a distraction from the real problems that dying people face. “I think it’s a moot debate that’s divorced from the reality of end-of-life care,” says David Magnus, a bioethicist at Stanford Medical School. That reality is clear in a report published last year by the Institute of Medicine of the National Academies of Science.
Titled Dying in America, it showed that patients often can’t get—or don’t know about—the type of treatment they actually need to be comfortable and pain-free in their final months, weeks, days, and hours. This is probably tied to the fact that America only has half as many palliative care physicians as it needs.
That’s not all. Magnus says insurance companies favor big lifesaving efforts and shiny technology. “We put a lot of emphasis on technology and innovations, and this tends to downgrade communication,” says Magnus. And clear communication about death is probably the first prescription is probably what most terminal patients need most.
As a result, patients end up getting treatment that doesn’t help them have a more comfortable death. In fact, it become the opposite. “You’ve got a patient who is sick, going though a roller coaster ride,” says Magnus. This includes cycles of chemotherapy and remission, trips to surgery to intensive care to therapy to home, then back again. “And each time, it’s much more difficult on the patient and on the patient’s family,” he says.
“A lot of what we see are patients who have some sense that their condition is bad but are not told explicitly how bad their prognosis is,” says Magnus. For example, many patients don’t understand the difference between palliative and curative treatments. “When they hear that their condition is treatable, they think there is a chance that they can be cured,” says Magnus. But treatable, to physicians talking to a terminal patient, often mean simply easing that patient’s suffering. Treatable has nothing to do with living or dying.
Other studies back up Dying in America. Last year, scientists published in the Journal of Oncology that with better communication, more terminal patients might choose hospice rather than more radiation or chemotherapy. A 2005 study showed that doctors regularly missed opportunities to convey information to patients that would affect their decisions about end-of-life care. Magnus has also done research on doctor-patient communication, and what he sees is usually pretty dismal.
“The caveat, is it’s very hard to communicate bad news to families,” says Magnus. He says it’s understandable that doctors hedge their discussions towards the positive. This goes back to the end-of-life training that doctors do not receive in medical school.
But until the medical system gets fixed (don’t hold your breath), patients can circumvent the assisted death circus by getting advanced care directives, such as a living wills. These are legal documents that outline how you should be treated in the event of a severe illness, accident, or just plain growing old. “100 percent of us are going to die, and only a quarter of Americans have engaged in formal advanced care planning,” says Nathan Kottkamp, founder and chair of National Healthcare Decisions Day, which advocates that people use April 16 to sit down, discuss, and develop their advanced care plan. The groups website has resources for drafting up the legal documents in every state.
Governor Brown signed the aid in dying bill into law despite criticizing the legislative gymnastics that let supporters get the bill voted on without first going through scrutiny by committees. Onlookers had also speculated that, as a former Jesuit seminarian, he might veto (Catholic groups oppose the bill).
But the bill had a groundswell of public support. According to a bipartisan public opinion poll, 69 percent of Californians are in favor of physician-aided death. “Why is this touching a nerve? Why is it millions of people want these laws on the books?” asks Magnus. He doesn’t believe it’s because so many people are terrified of having a sickness steal away their preferred choice: life. Rather, he says it speaks to a more common fears: dying in pain, without control, without dignity, surrounded by people they do not know in a place they do not want to be. The choice that concerns them is not whether to die, it’s how.
1 UPDATE: 17:10pm ET 10/5/2015 This story was updated after Governor Jerry Brown signed the assisted death bill into law.