by Jo Marchant
By contrast, in the standard model of care, argues Jackson, aggressive treatments are the only thing on offer. People with terminal cancer accept round after round of chemotherapy because in the absence of any alternative, not doing so basically means giving up.
“Intervention becomes synonymous with hope,” says Jackson. “And it’s not.”
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ALL TOO OFTEN when we receive medical treatment, our mental state is seen as a secondary concern, and our role as a patient doesn’t go much beyond signing consent forms and requesting pain-relieving drugs. When I gave birth to my first child, I received state-of-the-art medical care, but I felt (as many women do) like an object on a conveyor belt, a passive recipient of a bewildering series of medical interventions that started with breaking my waters and ended in emergency surgery. We often focus on the importance of pain relief during childbirth, but I ultimately found that loss of control more distressing than the physical pain I felt when later giving birth without powerful drugs.
The three projects described in this chapter—midwives supporting women during childbirth; radiologists changing how they talk to patients; and doctors discussing difficult questions with the terminally ill—instead give patients an active role to play. These might seem like commonsense interventions, but they all embody a fundamental (and for our medical system, revolutionary) shift in what it means to care for someone. Medicine becomes not an all-powerful doctor dishing out treatments to a passive recipient, but a partnership between equal human beings.
This principle is at the heart of many of the other cases we’ve seen so far too, including the IBS patients treated in Peter Whorwell’s hypnotherapy clinic, Manfred Schedlowski’s kidney transplant recipients, and the burn patients immersed in Hunter Hoffman’s Snow World. Instead of medicating their way out of problems with ever-greater doses of drugs and interventions, these medical professionals are harnessing their patients’ psychological resources as a critical component of their care. They’re doing this for adults and children; for chronic complaints and for emergencies; from birth until death.
This approach provides a better experience for patients. It costs less. And it improves physical outcomes. Patients suffer fewer complications, recover faster and live longer. The trial results show that individual cases like Daniel’s and mine aren’t lucky coincidences, but reflect a wider picture that holds strong across hundreds of thousands of patients. We are humans, not machines, after all. When we’re receiving medical care, our mental state matters. Those who feel alone and afraid do not fare as well as those who feel supported, safe and in control.
What, then, about the rest of the time? We spend the majority of our lives not as patients but as people in the push and pull of everyday crises—dealing with tricky relationships, stressful jobs and bad traffic; negotiating deadlines, disappointments and debt. In the second half of this book, we’ll look beyond medical therapies and treatments to investigate the importance of our minds from day to day. How do our thoughts, beliefs and emotions influence our physical health over the course of our lives?
At 4:30 a.m. on January 17, 1994, Los Angeles was hit by a devastating earthquake. With a magnitude of 6.7, it was the most powerful quake that had ever struck a major U.S. city. Shock waves generated 11 miles belowground ripped through the city for ten terrifying seconds. Apartment buildings collapsed, bridges and power lines toppled, hospitals were wrecked, and a 64-car freight train was derailed. Dozens of people were killed and thousands injured as the lights went out across the city and fires raged out of control.
Robert Kloner, a cardiologist working at Good Samaritan Hospital in downtown L.A., was asleep at his home when the tremors started. “The lights went out, and the house shook like a train,” he recalls. “Everything made of glass broke, our windows cracked, the wall of the bedroom partly came down.” As alarm flooded Kloner’s body, his heart raced and his blood pressure spiked. “It is one of the few times in my life that I felt I might die.”1
Few demonstrations of the mind’s effects on the body are as dramatic as sheer terror. Kloner was lucky enough to survive the quake unscathed. But he later discovered that for dozens of others who lived in the area, simply thinking that they were about to die was enough to kill them. The official death toll from the L.A. quake was 57, including people caught in the rubble of their homes, and a police officer on his motorcycle who fell 40 feet to his death when a freeway collapsed. But when Kloner studied cardiac deaths reported across the county during the period preceding the disaster and on the day itself, he uncovered a group of hidden victims.2
For the two weeks before the earthquake, an average of 73 people each day died of heart attacks. But on this terrifying day, the number jumped to 125, far beyond the usual range of variation. This suggests that around 50 people’s hearts failed as a direct consequence of the disaster. Spikes in cardiac deaths have been seen for other crises too,3 for example during the Iraqi missile attack on Israel in 1991 and the devastating earthquakes that hit Athens, Greece, in 1981 and Kobe, Japan, in 2005. Rather than being crushed by falling masonry, the extra victims were literally scared to death.
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IF YOU have ever stepped out in front of a car, or been woken by a scary noise in the dead of night, you’ll know how violently your body can respond to fear. Within a split second of sensing a threat, you feel a jolt of adrenaline as your heart beats faster, you breathe more heavily and your pupils dilate. Blood is diverted away from non-urgent areas such as the gut and sexual organs and towards the limbs and brain. Digestion slows, while fat and glucose are released into the bloodstream to fuel your next move.
This emergency response is known, of course, as “fight or flight.” It’s controlled by stress hormones released into the bloodstream, including adrenaline and cortisol, as well as the sympathetic nervous system, which connects the brain to the body’s major organ systems (and is behind the conditioned responses described in chapter four).
Fight or flight evolved initially as a response to physical trauma or stress: injury, exhaustion or starvation. But it can be triggered by psychological factors too. No need to wait until a predator bites. Our body is on alert as soon as we see, smell, hear—or even imagine—a threat.
The bursting blood pressure and racing pulse triggered by the perception of danger are at times so severe they can kill us, as Kloner found. Of course, dropping dead from fright is an extreme phenomenon that affects a relatively small number of people. Kloner tells me that it is most likely to affect those who already have weak hearts, and requires an intense situation in which you feel “personally, physically threatened.”4 In general, the fight-or-flight response is helpful: an instinctive reaction that has kept our ancestors alive in fast-changing environments over millions of years of evolution. It switches on in a heartbeat, and when the threat is over, our bodies relax again.
Or that’s how it works in most species. As Robert Sapolsky, a pioneering stress researcher at Stanford University, describes in his 1994 book Why Zebras Don’t Get Ulcers, a zebra being chased by a lion benefits from the full force of its fight-or-flight response. When the chase is done, the zebra recovers (assuming it hasn’t been eaten) and its physiology returns to normal—the picture of rest and calm. The animal doesn’t replay the twists and turns of the chase in its mind, or mull over whether it will be as lucky the next time.
But people are different from zebras. Our more sophisticated brains have given us the ability to learn from our mistakes and to plan for the future—but also to worry about our problems all the time. From terrorist attacks, job stress or relationships to bad traffic or a quarrel with a friend, we replay past situations and agonize about future ones. We call this stress, and it triggers the same emergency response in the body as being caught in an earthquake, albeit to a lesser extent. We could be sitting by the fireplace at home, surrounded by friends and eating a hearty meal, yet our minds and bodies are still on high alert.
Fortunately, these day-to-day concerns
don’t strike us down on the spot. But given time, they can be just as deadly.
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LISA’S LIFE is bound by laws that she can’t predict or understand. “I live in fear of breaking one of Brandon’s rules,” she says. It could be a slight change to the daily routine, a step or movement out of place, or something that she has no control over at all. “Sometimes I don’t even know what’s going to set him off, and then he’s going to cry and scream. He can turn into an animal when he gets upset.”
Lisa is a 42-year-old economist from San Francisco, and Brandon is her son. Four years ago, he was diagnosed with high-functioning autism. Caring for him is a challenge every minute of the day, so I’ve called her to find out what it’s like to live with constant, unrelenting stress.
At first, says Lisa, she just thought her toddler had a quirky, quiet personality. But as Brandon got older, it became clear something was wrong. He would repeat words, or open and close doors nonstop, for perhaps 20 minutes at a time. After the diagnosis of autism, the family took a different course. Lisa gave up her full-time job (she now works part-time) to look after Brandon and his older brother Nathan. But Brandon’s behavior continued to deteriorate. He was immersed in his own imaginary world and would lash out with violent tantrums.
Brandon is now eight years old. I ask Lisa for a photo and she emails me one taken at home earlier that day. Mother and son are sitting together on the floor, leaning against a sofa, relaxed and smiling. Brandon looks adorable in a blue T-shirt, with light brown hair and a cute grin directed straight at his mom.
The shot looks carefree, but as I listen to Lisa’s story, I realize that it has taken her years of hard work and heartache to get to this point. For a year or so, Brandon’s behavior was so bad that Lisa couldn’t leave the house. “I thought he was going to end up in an institution,” she says. After getting help from a behavioral therapist, life has become more manageable. Lisa now does play therapy with her son every day, encouraging him to interact and to make eye contact. He’s obsessed with maps, she says, and has memorized the whole San Francisco public transportation system. “If I’m playing along with his pretend world, he’s really delightful.
“But I have to continually stay on it,” she adds. “It’s not like I can relax.” Brandon goes to a normal school but is falling behind academically, she says, and doesn’t have any friends. At recess, when the other kids play together, he walks around the edge of the playground pretending that he’s a bus driver. Lisa is convinced that he wants to interact, but doesn’t know how.
“It’s heartbreaking,” she says. “If he sees someone hurt on the playground he goes over to them and wants to help. But he doesn’t know what to say.” Brandon needs a one-to-one aide at school, which he hates, and which acts as a further barrier between him and the other children, so she’s looking for a school where he can be more independent. “I’m devoting my life to getting him into the right environment.”
At home, Lisa lives her life in 15-minute intervals. “I have to constantly either give him something to do or interact with him directly, otherwise he’s going to have trouble,” she explains. “From the moment I wake up, I have to plan the day, how it’s going to go. And then hope for the best.” The worst times are when Brandon gets upset, which is a lot. He cries and screams, sometimes for hours. “One time he came out of a church group and it hadn’t gone well,” says Lisa. “He punched me in the stomach. I was just like, Wow, I can’t hand him back. I’m going to have to be Mother Teresa just to love him.”
What kind of things upset Brandon, I ask. He gets overwhelmed by stimulation, she replies; the sound of laughter if they have visitors, for example. “He’ll start screaming because it’s so loud.” Small details that don’t go his way can also derail him. That includes any change to the daily routine, like when she picked Brandon up from school and Nathan wasn’t in the car as usual because he’d had a doctor’s appointment. When his brother steps on one of his maps. Or the time she ripped a piece of paper to write something down.
“Oh gosh,” she says. “He didn’t like that I ripped the paper, he threw a fit about that.”
There’s a pause, and I realize that Lisa has been speaking through her tears. I try to imagine what it must be like. The exhaustion, the uncertainty for the future. The unpredictability and the struggle to connect. The desperation of having a child imprisoned, alone and frustrated, in a world that you can’t rescue them from; a world that you can only ever glimpse.
I’m sorry, I say, and I don’t just mean for making her cry.
—
THE CHALLENGES of caring for Brandon have often pushed Lisa to the breaking point. “When he is freaking out, I hate to admit it, but sometimes I would freak out too,” she confesses. And they have pushed her family past it. She and her husband are in the process of separating. They remain on good terms and plan to set up two caring homes for their children, but their bond has broken under the strain of their son’s condition. “I can’t deal with my husband and the kids,” says Lisa. “It’s one or the other.” The devastating psychological and emotional effects of her situation are clear. But what about the physical impact?
Over the last few decades, scientists have realized that constant stress can ravage our bodies. Not surprisingly, the cardiovascular system is particularly susceptible. Switched on long term, the raised blood pressure triggered by the fight-or-flight response can damage blood vessel walls, eventually causing problems from clogged arteries to heart attacks. Trials that followed tens of thousands of British government workers—known as the “Whitehall studies” after the London street on which the government buildings are located—have found that those with more stressful jobs die significantly younger, mostly because of heart disease.5 In Eastern Europe amid social collapse after the fall of Communism, death rates from heart failure spiked.6
Chronic stress reaches beyond the heart, however. During fight or flight, the body burns fuel to raise blood sugar levels. This gives us a crucial energy boost, but over time it can increase the risk of obesity and diabetes. And it plays havoc with our immune system.
Until a few decades ago, scientists didn’t think it was possible for psychological stress to affect the body’s response to infection, but there is now a flood of evidence proving the link. The effects are complex, but in general, acute bursts of stress (lasting minutes to hours) seem to boost the immune system in readiness for injury, an effect that’s mediated by stress hormones including cortisol.7
Once the stressful event is over, levels of these hormones quickly return to normal; cortisol acts as its own off-switch, for example. It’s a clever system that ensures the activated immune cells—which cost energy, and might attack the body if switched on too long—are only around as long as they are needed.
When we’re under chronic stress, however, cortisol is released into the body all the time. This acts as a permanent off-switch, and suppresses the immune system. Chronic stress impairs our response to vaccines, and makes us more susceptible to infections from the common cold to HIV.8
And if we’re too stressed for too long, the off-switch can wear out, and our bodies no longer respond to cortisol as they should.9 This allows the immune system to rage out of control, leaving us more susceptible to allergies, and most damaging of all, chronic inflammation. Visible as the swelling and redness that appears around a scratch, inflammation is the body’s first line of defense against infection and injury. Tiny blood vessels dilate and become leaky, allowing blood and immune cells to spill out into the surrounding tissue. This can clear an area of irritants, invaders and damaged cells quickly and effectively, and a brief spike of inflammation is a crucial part of wound healing.
But switched on long term, too much inflammation disrupts the process and wounds actually mend more slowly—researchers have seen this in women caring for a relative with Alzheimer’s disease, in dental students facing exams, and in married couples when they fight.10 High levels of inflammation exacerbate autoimmune diseas
es from eczema to multiple sclerosis. And over time, inflammation eats away at healthy tissues such as bones, joints, muscles and blood vessels; one stress researcher I spoke to calls it “the juice of death.” In Europe and the U.S., around a third of us have inflammation levels that are dangerously high,11 and scientists are realizing that this causes or contributes to conditions including diabetes, heart disease, arthritis, osteoporosis and dementia—all of the chronic diseases that plague us as we age.12
The physiological changes caused by stress seem to play a role in some cancers too. Many epidemiological studies, following millions of people over time, have found that even after controlling for behavioral factors such as smoking and drinking, stressful life events increase the risk of certain cancers. (Others don’t see an effect, however, possibly because any link is likely to depend on the type of stress, the body tissue affected, and the developmental stage of the tumor.)13 Meanwhile lab experiments suggest that stress inhibits DNA repair mechanisms, at least in animals, and that it suppresses parts of the immune response, such as natural killer cells, that normally fight tumors.14
And by boosting inflammation, which clears away damaged cells and promotes the growth of new blood vessels, the fight-or-flight response provides just what a developing tumor needs: a local blood supply and space to grow. If mice with various cancers are subjected to stress, or injected with the stress hormone adrenaline, their tumors grow and spread faster.15 (Giving them a drug that stops adrenaline binding to cells blocks the effect, and several research groups are now studying whether similar drugs in humans—called beta-blockers, already widely used in health care to treat hypertension—have a similar protective effect.)16