by Jo Marchant
In the meantime, women who give birth in hospitals continue to receive every medical intervention they need—and many they don’t.
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“SPIDER-MAN!” SAYS eight-year-old Daniel excitedly, showing me an oxygen mask that he has decorated with stickers. A ring of tiny Spider-Men dance around the edge of the mouthpiece. He’s sitting on the edge of the bed, swinging his legs, wearing a green hospital robe decorated with stars and hearts.
Daniel is a cute Hispanic boy with dark, spiky hair and a cyst in his brain. Doctors are following the lesion closely to make sure that it doesn’t grow, and he’s here at Boston Medical Center (BMC) in Massachusetts for his regular MRI scan. “Spider-Man!” he says again. He wrinkles his nose and shows his top teeth in a broad grin.
Like Harborview, BMC serves a challenging demographic. Patients here tend to be poor and disadvantaged. Many of them don’t have medical insurance and many don’t speak English. When I arrive at eight in the morning on a cold, gray day, the hospital buildings are modern and impressive but the mood is slightly forlorn. Outside, a bulky guy in a Yankees cap announces, “I’ll take you home with me, baby,” before asking for some change.
In the cavernous entrance lobby, a teenager dressed in black swears into an iPhone as he circles the spiky palms in giant pots spaced across the floor. Through a door to the left is the radiology waiting room, where bored-looking patients watch a discussion of Kim Kardashian’s wedding dress on TV. But as I continue down the corridor, the mood changes. I come to a small but jolly curtained area decorated with kids’ drawings and animal photos. There’s a bulletin board covered with cutout kittens. A cupboard packed full with toys. And MRI nurse Pamela Kuzia, smiling and maternal, with pink, flowery shoes.
Kuzia’s job is to get the hospital’s youngest patients through their MRI scans. This involves lying still in the cramped tunnel of the scanner for around an hour, a daunting experience even for most adults. Where possible, she works to do this without sedating them: “Our job is not to medicate anyone if we don’t have to,” she says. The younger kids and the more anxious ones, she puts under. But even then, getting them into the scanner room and onto the table to be sedated can be a challenge.
Kids like Daniel, for example. He’s developmentally delayed. His mother doesn’t speak English, and she gets nervous in the hospital, which rubs off on her son. And some of his previous scans have been traumatic, such as when the needle delivering the sedative drugs came out of his vein and fluid started leaking into his arm. It got to the point where Daniel would start crying as soon as he saw Kuzia in the lobby.
But things are different now. When Daniel arrives today, he’s calm but quiet, eyes wide. Kuzia hands over some Matchbox cars (she knows they are his favorite), then gives him the oxygen mask to hold. “This is your pilot’s mask,” she says cheerily. “So, Mr. Daniel. Do you like bubblegum or strawberry?” He smiles for the first time. “Bubblegum!” he says. Kuzia duly sprays the mask and a sickly bubblegum smell fills the space. Daniel holds his newly scented mask proudly, fiddling with the nozzle. By the time he has decorated it with stickers, he’s bouncing with excitement.
Then it’s time to go to the scanner room. The entrance to the suite could not be more intimidating. It is surrounded by warning signs on the doors, wall and floor. Stop! There are red panels. Danger. Yellow and black squares. Caution, Magnet Always On. Across the threshold is a large room full of equipment, carried on wheeled stations with screens, wires, buttons and flashing lights. There are spotlights, scissors, gas canisters, drips, pump bags, boxes of gloves and tubes of cream. And in the center of the floor, humming loudly, a doughnut-shaped tunnel—the scanner itself.
It generates a forcefield tens of thousands of times stronger than the earth’s magnetic field, which means that any metal object inadvertently brought into the room—a pen, watch, paperclip or earring—could be propelled towards the scanner (and anyone inside) with deadly speed. It’s big and imposing, with a narrow sliding table for the patient that reminds me of the trolleys used to slide corpses in and out of storage freezers in a morgue.
Kuzia has got Daniel to the door. Now she has to get him onto that trolley.
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YOU DON’T need to be a burn or trauma patient, or giving birth, to be confronted with a distressing or painful medical procedure. Millions of people every year undergo not just scans but invasive procedures such as biopsies and keyhole surgery while wide awake. Unlike open surgery, which involves cutting a large incision in the skin, in a keyhole operation the surgeon works through a tiny opening, guided by images from a camera on the end of a tube.
Wounds heal faster than with open surgery and patients can often go home the same day. Patients don’t generally require general anesthesia, and instead receive local anesthetics combined with sedative drugs. But despite the benefits, being awake while you’re operated on can be a daunting prospect. Dangerous side effects limit the amount of sedative drugs that doctors can give safely, and patients typically report high levels of anxiety and pain.
One of the people who carries out such procedures is intervention radiologist Elvira Lang. “I do surgery on awake people,” she says. “You have the challenge to get a patient on the table, keep them on the table, and be able to do what you need to do with dignity.”20 Instead of simply dishing out drugs, she wondered if she could mobilize her patients’ psychological resources. So she developed a blend of empathic communication skills, positive suggestion and visual imagery that she hoped would help them to relax, and ease their pain. She calls it Comfort Talk.
While working at Harvard Medical School hospitals in Boston, Massachusetts, Lang tested her approach in randomized controlled trials of more than 700 patients undergoing invasive medical procedures such as breast biopsies or removing a kidney tumor.21 In the trials she compared her intervention plus standard care (“conscious sedation,” where intravenous pain-relieving drugs are available on demand), with standard care alone.
In all of Lang’s trials, the patients who received Comfort Talk reported far less pain and anxiety than those who received standard care alone. In a trial of 241 people undergoing renal and vascular procedures, pain scores in the intervention group peaked at 2.5 out of 10 compared to 7.5 for the controls, and their anxiety, instead of steadily rising, dropped to zero.
That’s not all, however. Just as in trials of childbirth, Lang found that prioritizing patients’ psychological state confers hard physical benefits too. Those who received Comfort Talk required much lower levels of sedative drugs, and suffered far fewer complications. In the trial of renal and vascular surgery, for example, patients in the intervention group required only half the amount of drugs. Their procedures were also completed on average 17 minutes faster, saving the hospitals $338 per patient.22
But after two decades of work, and the kind of trial results that drug companies would kill for, Lang’s ideas were not being taken up by other hospitals. So she decided to disseminate the technique herself and left Harvard to set up her own company, training medical teams in her approach.23 She’s still running clinical trials but now focuses on economic rather than health outcomes “because frankly that’s what hospital administrators are interested in.”
One area she hopes to transform is MRI scans like Daniel’s. If patients are too nervous to lie still in the scanner for the hour or so of their exam, the scan has to be aborted—contributing to what is known as the “claustro rate.” Reducing the claustro rate is a continual struggle, says Kelly Bergeron, manager of the MRI facility at Boston Medical Center. MRI scans can be particularly daunting for patients like those at BMC, she explains, because they tend to be poorly educated and aren’t well versed in medicine. “They don’t really know what’s happening to them. So to bring them into this sort of technology is frightening.”
If patients fail to complete their scan the first time around, they have to come back for a second appointment, generally with the help of a sedative, says Bergeron. But if they
are very anxious the drug may not work. “They fight the medication. What might knock somebody out for a week, this patient is bouncing off the walls.” So they have to come back a third time, perhaps under general anesthesia, with all the health risks, recovery time and cost that entails.
Lang estimates that such wasted scans cost between $425 million and $1.4 billion each year in the U.S.24 If Comfort Talk helps people having biopsies and keyhole surgery, could it get them through MRI too?
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“STINGING COMING UP!” “Another sharp jab in a minute.” “You’re going to feel some burning.”
Warning patients about pain or discomfort they are about to feel is a staple of conventional medical care. But Lang argues that during medical procedures such as scans or operations, we are particularly susceptible to the nocebo effect, and that being told how much things are about to hurt simply worsens our pain. “As soon as you put your foot into a medical facility or a dentist’s surgery, you are already in a hypnotic state,” argues Lang. “You are very highly suggestible.”
To prove her point, Lang worked with Harvard placebo researcher Ted Kaptchuk to analyze 159 videos of patients going through surgery as they rated their pain and anxiety every 15 minutes.25 In the videos, medical staff often gave graphic warnings about upcoming pain (including the lines listed above). When patients received these warnings ahead of potentially painful events such as injections or puncturing the skin—even if the negative words were preceded by qualifiers, such as “not much” or “a little”—their pain and anxiety scores soared.
A key part of Lang’s Comfort Talk approach, then, is eliminating negative or scary language. Instead of continually telling patients how much pain they’re going to be in, Lang suggests warning of any negative possibilities beforehand, during the informed consent stage. “But after all that is done and the patient is there, you don’t need to say that it’s going to sting or burn.”
Lang recently trained Bergeron’s team in the use of Comfort Talk. Although Bergeron thinks her team already dealt with patients sensitively, she says Lang helped them to rethink the language they use during scans. Before their training, her staff routinely warned patients of upcoming discomfort, for example when they were about to be injected with contrast dye, which helps certain tissues to show up more clearly on the scan. “Now there’s no mention of a needle or a bee sting,” says Bergeron. “We took all of that out. Now we say, ‘I’m going to give you the contrast.’ ” Instead of locking patients into the scanner, staff make them comfortable. The panic button has become the call bell.
Another component of Lang’s approach is encouraging patients to visualize positive images. One of the scariest parts of an MRI scan is being immobilized in the “head coil,” a plastic mask that locks in place over your face. Bergeron and her colleagues now suggest to children that they are flying in a rocket ship, or that the head coil is a football mask. For adults, they might suggest lying back on a massage table, and even provide a choice of orange or lavender aromatherapy tabs to supplement the illusion of a trip to the spa.
And if a patient is very nervous, staff can read from a script.26 This is presented as a relaxation exercise but is similar to a hypnotic induction, in which patients are invited to roll their eyes upwards, breathe deeply and focus on a sensation of floating, before imagining a pleasant setting of their choice. Bergeron says her team felt awkward doing this at first, but soon saw the benefits. “You can read from that piece of paper and it still works,” she says. “If they are listening, it’ll calm them down. It’s kind of crazy but it does really work.”
In a study of around 14,000 MRI appointments, Lang showed that training MRI teams to use Comfort Talk reduced the claustro rate by nearly 40% (saving hospitals $750 to $5,000 for each saved scan, depending on the insurance carrier and facility).27 She has found similar results in a so-far unpublished study of 90,000 appointments, in which the BMC team participated.
Despite Lang’s positive results, Bergeron predicts a struggle persuading the medical establishment to embrace Comfort Talk. “Because it is really not medicine at all, it is just a mindset,” she says. “It is very difficult to bring that sort of tool or mentality into a Western-based health system that is driven by testing and results.” Nonetheless, she says that since her team started using the approach, patients are more likely to get through their exams, scans go quicker with fewer interruptions, and fewer patients need to be sedated with drugs.
Even better, “I haven’t seen a screaming kid go in there in I can’t tell you how long,” says Bergeron. “It’s been one of the biggest benefits of this whole thing.”
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KUZIA TAKES Daniel across the danger threshold into the scanner room. She walks him around the beige tunnel, watched by white-coated medical staff though a window from the control room next door. “This is the big room. Inside here is the big giant camera.”
She encourages Daniel to slap the side of the tunnel, then points to the table. “Come and sit right up here.” He hops up and she keeps talking. “Here’s your pilot mask. All spaceships need a pilot mask. How about some stickers on your belly? One, two, three, four.” He sits quietly as she sticks four ECG pads onto his chest to monitor his heart, and slips a blood pressure cuff on his arm.
The anesthetist stretches out some plastic tubing and attaches it to Daniel’s mask. “Pilots have oxygen when they’re high in the sky,” he says. “Your job is to breathe the oxygen.” Daniel holds the mask to his face and inhales. Then he cries out, and Kuzia holds him close. “Think about a Spider-Man adventure,” she whispers. Then two seconds later, “He’s asleep.” Daniel has done perfectly.
Next time, says Kuzia, he can try his scan without sedation. Simple changes such as avoiding scary language, letting him choose a scent and decorate his mask with stickers, and encouraging him to imagine a spaceship ride, have transformed a screaming, resistant boy who had to be sedated in traumatic circumstances into an engaged one who from now on hopefully won’t need any drugs at all.
Kuzia lays Daniel down and covers him with a sheet, before sliding him inside the scanner. He’s surrounded by beeps and pings, and his heart rate pulses green on a nearby monitor. Next door, in the control room, slices of his brain appear on the computer screen, floating white on black.
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ACROSS TOWN at Massachusetts General Hospital, Vicki Jackson cares for people with terminal illness. As a palliative care specialist, her job is not to prescribe drugs or treatments, but to talk. She confronts questions that people facing death often aren’t asked: how much do they want to know about their prognosis; would they rather reduce symptoms or lengthen life; where and how do they wish to die? Jackson’s primary aim is to increase quality of life during the time that these patients have left. But in a pioneering trial published in 2010, she found that these discussions can do far more than that.
The study, led by oncologist Jennifer Temel, followed 150 patients who had just been diagnosed with terminal lung cancer.28 Once diagnosed, these patients typically have less than a year to live. Half of the patients in Temel’s study received standard cancer care. The doctors were focused, as you might expect, on the patients’ medical condition: planning their treatments, monitoring progression of their tumors and managing any complications. The rest of the patients received exactly the same treatment but were also offered monthly sessions of palliative care.
During these sessions, Jackson and her colleagues focused not on the medical details of the patients’ cancer but on their personal lives, including issues such as how they and their family were coping with the diagnosis, and with any side effects of their treatment. For example, Jackson tells me about a patient with pancreatic cancer—let’s call him Peter—whom she saw the day before our interview, after his latest scan revealed bad news.
“His oncologist spent 40 minutes going over the scan results, and then I spent another hour going over it with him,” she says.29 The message from the oncologist was that Peter i
s unlikely to benefit from further chemotherapy; Jackson’s task was to discuss with Peter what that means in terms of how he should live his life. “His son is getting married in six months. I don’t think he is going to make it to the wedding,” she says. “How is he going to talk to his children, who live all over the country, especially his son?”
Jackson says she couldn’t do her job without getting to know her patients as rounded people—their interests, values and families. Good palliative care isn’t so much about helping people to die as helping them to live, she says. Working out how to do that requires figuring out who they are as a person and what living means to them, whether it’s playing golf, watching soap operas, or being well enough to attend a wedding. “For every person it’s different.”
On average, the lung cancer patients in Temel and Jackson’s study received four sessions of palliative care. The results were striking. Compared to a control group, these patients had much better quality of life (a measure that includes ratings of physical symptoms) and felt significantly less depressed. They also received much less aggressive care at the end of their lives, with fewer rounds of chemotherapy and longer hospice stays. But the researchers were surprised to find something else. The palliative care group survived for an average of 11.6 months, compared to 8.9 months for the control group.30
It’ll take more and larger studies to confirm this result and pin down exactly why simply talking to a palliative care specialist had such a dramatic effect. The lower rates of depression may be one factor—in general, cancer patients who are depressed don’t live as long. It’s probably also because aggressive treatments given at the end of life, when patients are very sick, can hasten death rather than delay it.
When patients had the opportunity to talk to someone not about their tumor but about what they wanted from the time they had left, they made different choices. They still chose aggressive care early on, but in their final few months switched their focus to maximizing quality of life. They received less last-ditch treatment and, alongside all the other benefits, seem to have survived longer as a result.
