Stephen Maturin [made] his medicines more revolting in taste, smell, and texture than any others in the fleet; and he found it answered—his hardy patients knew with their entire beings that they were being physicked.
—Patrick O’Brian, English novelist
A hundred years ago, a boy named Maxugalis lived on what is now called Vancouver Island in Canada. He became interested in shamanism because he thought it was a sham and he wanted to expose the shamans’ tricks to his community. The problem was that he didn’t know how their tricks worked. So he asked master shamans if he could sign up as an apprentice. Finally, one master shaman agreed. One day a patient came to the shaman suffering from wild hysteria. The shaman held the patient down and appeared to suck out a demon from the patient’s kidney into his mouth, then spat out a bloody clump. However, Maxugalis had been watching carefully and he saw that the shaman had hidden some eagle feathers between his lip and gum, which he had covered in blood by sucking on his gum very hard. This was what he then spat out. Curiously, however, despite the illusion, the patient appeared to get better.
With proof of the deception, Maxugalis prepared to expose shamans as phonies. But before he did so, he wanted to complete his apprenticeship, which required that he treat some patients himself. Eventually a chief in a nearby village whose grandson was very ill summoned him. On Maxugalis’s arrival, the chief looked at him and said, “I dreamed of you as our savior.” Maxugalis was surprised—how could the chief dream of a phony shaman as a savior? He did the eagle-feather trick and was shocked when the chief’s grandson recovered. The chief was so happy that he anointed Maxugalis with a new powerful shamanic name, “Quesalid.”
Quesalid didn’t believe he was doing real medicine, but he saw that the rituals he used had a great effect on his patients. He went on to become one of the most successful and popular shamans in the region. According to anthropologist Claude Lévi-Strauss, “Quesalid did not become a great shaman because he cured his patients; he cured his patients because he had become a great shaman.” In a nutshell, the patients got better because they believed in Quesalid’s power.
Before the dawn of modern medicine, many treatments used by doctors, such as bloodletting, leeching, and purging, were ineffective and often harmful. Since they could not cure many illnesses, they had to focus on caring for the patient and communicating empathy. This became known as a “bedside manner.” Doctors also encouraged their patients to exercise and avoid overeating to prevent illness. It has been known from at least as far back as Ancient Greece that overeating and lack of exercise cause a large proportion of diseases. Hippocrates even claimed that excess eating caused more diseases than undereating.
Modern medicine changed things dramatically. We now have many powerful treatments including anesthetics that can knock you out, the drug adrenaline that can bring you back to life, surgery to fix damaged hearts, and antibiotics to cure deadly infections. Compared with these, Quesalid’s rituals and bedside manner seem primitive. There is also less money in it.
You may not be surprised that the health benefits of empathetic communication with patients are not widely known. Expensive drugs and medical devices are aggressively promoted through sophisticated advertising, marketing, and public relations operations funded by the pharmaceutical and medical supply companies. Careful listening, kindness, reassurance, and sympathy can’t be patented. And—until recently—the benefits of these things have not been quantified, so it has been difficult to predict their financial benefits.
This all means that the doctor’s role as a caring healer has been obscured beneath financial and bureaucratic systems that focus on targets and paperwork and all but ignore doctors’ role as healers. General practitioners in England, for example, are often allotted a maximum of just ten minutes per patient. Patients complain about this. I did a study looking at how empathetic patients believe their health-care practitioners (doctors, nurses, or therapists) are. The results varied widely. We found sixty-four studies with approximately 5,000 patients across thirteen countries, including the United Kingdom, Australia, the United States, France, Germany, and China. Male health-care practitioners were not ranked as highly as female practitioners, and practitioners in Australia, the United States, and the United Kingdom were considered to be more empathetic than their colleagues in other countries such as Germany and China. Empathetic care is not universally valued or applied, and this needs to change.
Patients are not the only ones who lose due to the lack of focus on empathy: doctors suffer, too. Patients complain less about doctors who communicate well (which saves everyone involved a headache), and there is emerging evidence that doctors who express empathy are less likely to get burned out and are healthier. As a society, we have come to view doctors less and less as healers and more and more as pill dispensers. According to the British Medical Association, some general practitioners are required to see as many as sixty patients per day. Then doctors have to report to managers to tell them what tests and treatments they have given out to make sure that they haven’t given too much or too little. The situation is only slightly better in the United States and Canada, where a tenth of patients get less than ten minutes with their family doctors.
Under these conditions, it is hardly surprising that doctor burnout rates are worryingly high and many promising medical students either look for work abroad or choose to work for consulting firms rather than becoming doctors. If doctors were valued as healers—the way Quesalid was—then the time they spent with patients would be valued as much as the fancy tests and treatments they give. In fact, recent evidence shows that doctors’ old-fashioned bedside manner is as powerful as drugs for some common ailments.
Harvard professor Ted Kaptchuk and his team studied the doctor effect on patients with irritable bowel syndrome (IBS). Half the participants in his study had a normal interaction with their doctor lasting no more than five minutes, while the others received an augmented forty-five-minute interaction. In these longer consultations, the doctors asked detailed questions about patients’ symptoms, how their condition related to relationships and lifestyle, and how the patients understood their condition. The doctors were instructed to display empathy, use engaging body language, and say things like “I can understand how difficult IBS must be for you.” The doctors were also told to pause for twenty seconds of thoughtful silence while feeling a pulse or thinking about the best treatment plan.
After three weeks, Kaptchuk’s team measured the IBS symptoms in both groups of patients. The reduction in symptoms in the patients with augmented care was more than 20 percent greater than the reduction in the normal interaction group. Kaptchuk’s study is not the only one. Dozens of others—including one systematic review that I conducted—have established that practitioner empathy can help cure patients suffering from common ailments such as pain and anxiety. This doesn’t mean that empathy should replace medicine, but that it should be used alongside it.
Archie Cochrane, the pioneering Scottish doctor mentioned in Chapter 1, tells a dramatic and revealing story about his experience as a doctor in a POW camp during the Second World War:
The Germans dumped a young Soviet prisoner in my ward late one night. The ward was full, so I put him in my room as he was moribund and screaming and I did not want to wake the ward. I examined him. He had obvious gross bilateral cavitations and severe pleural rub. I thought the latter was the cause of the pain and screaming. I had no morphia, just aspirin, which had no effect. I felt desperate. I knew very little Russian then and there was no one in the ward who did. I finally sat down instinctively on the bed and took him in my arms, and the screaming stopped almost at once. He died peacefully in my arms a few hours later. It was not the pleurisy that caused the screaming, but loneliness. It was a wonderful education about the care of the dying. I was ashamed of my misdiagnosis and kept the story secret.
Besides his brutal honesty, the interesting thing about Cochrane’s story is that if morphine had been available, he would have given it to the patient. The morphine may have stopped the screaming, but it was not what the patient needed.
My colleague Karen Quinn (her real name has been changed to preserve anonymity) told me a less dramatic but perhaps more common story about three Oxford medical students who were told to diagnose a woman complaining of moderate shoulder pain. Let’s call the woman Jane (again, her name has been changed for anonymity). After twenty minutes of questioning, the students had a meeting. They wrote seven pages of notes and recommended three different drugs, including a powerful steroid injection. Karen examined the notes and did not see anything wrong—the students had followed the guidelines perfectly. But something told her there was more to the story. She went to see Jane and asked in a warm way how her family was. The patient immediately broke down in tears and told her about a recent tragedy involving her daughter. Jane didn’t need three drugs, she needed some tender loving care.
In his wonderful book Being Mortal, the American surgeon and writer Atul Gawande tells us the story of a man he met when he was a young intern. He calls the man Joseph Lazaroff. He was a city administrator who had lost his wife to lung cancer a few years earlier. He was now in his sixties and suffering from a widely metastatic prostate cancer, which is currently incurable. He had lost more than fifty pounds; his abdomen, scrotum, and legs had filled with fluid; he could not move his right leg; and he could not control his bowels. Gawande met Lazaroff as an intern on the neurosurgical team and discovered that it was even worse: the cancer had spread to his spine, where it was compressing his spinal cord.
Although the cancer could not be cured, the doctors hoped it could be treated with radiation. They tried radiation, but it didn’t help. So the head neurosurgeon offered him two options: comfort care or surgery to remove the growing tumor from his spine. Lazaroff chose surgery. Gawande’s job, as the intern on the neurosurgery service, was to get Lazaroff’s written confirmation that he understood the risks of the operation.
Gawande had recently graduated and was inexperienced and very nervous. He was sweating as he tried to think of how to explain the dangers of the invasive and risky surgery. In the best case, the operation would halt the progression of his spinal cord damage. It would not cure him or reverse his paralysis. No matter what they did, Lazaroff had at most a few months to live. Worse, the surgery was very risky. Surgeons would open his chest, remove a rib, and then collapse a lung to access his spine, where they would try to cut out the tumor. He would lose a lot of blood and it would be hard to recover. Because he was already weak, there was a high risk of serious complications like more paralysis, stroke, or even death. Apparently the neurosurgeon had described these dangers, yet Lazaroff was adamant that he wanted the operation. All Gawande had to do was go in to take care of the formal paperwork. He walked in to find Lazaroff looking gray and emaciated. He told him of the risks again. Lazaroff remained clear.
“Don’t you give up on me,” he said. “You give me every chance I’ve got.”
They did the surgery, which lasted almost nine hours. The surgeons rebuilt Lazaroff’s spine with acrylic cement. The pressure was removed from his spine, so the surgery was a “success,” but that was the only good thing about the story. In intensive care, Lazaroff developed respiratory failure, an infection, and bleeding. After a few days, everyone involved (the family and the doctors) finally had to admit he was dying. After two weeks, his son told the team to take Lazaroff off life support, which they did. Lazaroff died.
Gawande believes that Lazaroff had chosen badly because the operation could not possibly have given him back his continence or anything close to the life he previously enjoyed. Lazaroff, Gawande said, “was pursuing little more than a fantasy at the risk of a prolonged and terrible death—which was precisely what he got.”
Sadly, Lazaroff’s story is not the exception. I accompanied my mother to the hospital when she had metastatic cancer in her breasts, lungs, heart, and bones, and the doctors told her she would recover quite a bit and be okay for a few years. This was not true, but to the doctors the important thing was prolonging life, not quality of life. In fact, the obsession with carrying out tests was to the exclusion of what we might call commonsense good care. Sometimes she had to wait as much as eight to ten hours when she had an appointment. Far from getting better after having her brain radiated and being put on numerous different pills, my mother ended up bedridden. Luckily, she realized what was happening and chose to stop the aggressive treatments. She died at home surrounded by loving family.
Often when people get a serious illness, the sad truth is there is no cure. So the important thing is to communicate with them lovingly to help them make difficult, but good, decisions, then give them loving care for the last weeks or months of their lives. Instead of this, according to Gawande, the medical profession is obsessed with giving heroic treatments such as multiple bouts of chemotherapy, aggressive surgery, and sticking tubes into people. These things rarely extend life and almost always lower the quality of the remaining time people have to live. Instead of dying at home in the company of loved ones, many people die in hospitals hooked up to machines and so overmedicated that they have no clue what is happening.
To be sure, there are no easy answers to the decisions that Joseph Lazaroff and my mother had to make. Talking about fast-approaching death is hard to even imagine for most of us. But we can do better. There is another way that is not considered seriously enough: hospice care. Hospices were traditionally Roman Catholic institutions that provided hospitality for the sick, wounded, or dying, as well as travelers and pilgrims. That is how they got their name. They are places people go when they accept that their illness cannot be cured and they are definitely going to die. Hospices provide round-the-clock expert care and support. People can also receive hospice care at home, through regular visits from nurses, and have a 24/7 telephone service allowing them to summon help. This form of care focuses on treating symptoms like pain, fatigue, and breathlessness, and on creating a warm, welcoming environment. It seeks to maximize patient independence as well as offering counseling and emotional support.
When Lazaroff said, “Don’t you give up on me,” he was clearly stating that he did not want the option of hospice care. However, Gawande believes that he was never offered it as a genuine choice, because nobody was prepared or skilled enough to have a difficult conversation with him. Palliative care doctors such as Dr. Susan Block specialize in these end-of-life discussions. Block asks very sick patients questions such as:
These questions are not easy, because they raise difficult issues about the reality of serious disease. Block notes correctly that end-of-life discussions with patients and their families require no less skill than performing a complex surgical operation.
So why aren’t patients like Lazaroff and my mother given the choice of palliative care? Besides the reason that some patients are desperate and will try anything, palliative care as a profession is not as sexy as surgery, oncology, or intensive care, so the number of palliative-care doctors has been dwindling. Another reason is that by admitting that the patient is going to die, it can appear as though the doctors are giving up. Fortunately, insurance companies are pushing for more palliative care, although their motivation is not concern for patients. Twenty-five percent of health-care funds are spent on the 5 percent of people in their last year of life.
An insurance company called Aetna noted the disproportionate amount of money they were spending on the last few months of people’s lives. They sponsored a trial in which they offered 151 patients two choices. Either do as Lazaroff did and continue with their regular treatment regimens or choose hospice care. Aetna paid for whatever option the patient chose. Since many patients are like Lazaroff and do not like the idea of giving up, Aetna allowed those who chose hospice care to continue with any treatment they liked. Since patients had the choice and since Aetna paid no matter what they chose, the patients had nothing to lose when they opted for hospice care.
Here is what happened. After skilled palliative-care doctors had the difficult conversation with the patients and they were able to see the options clearly, many chose hospice care. When I started reading this study, I suspected that the patients who chose hospice care would end up enjoying a better quality of life, but would die sooner. I was wrong.
Patients who chose hospice care ended up using emergency rooms half as much, intensive-care units only a third as much, and overall costs fell by one quarter. They were also able to prepare for their eventual demise, make final visits to favorite places, and talk to their grandchildren—things that those who opted for conventional treatment paths often were not able to do because they ended up in intensive-care units. What really surprised me was that besides living better, the patients didn’t die any sooner—they lived as long or longer than those who chose aggressive treatments.
The Aetna study is not unique. In another study, patients with terminal cancer who had discussions with palliative-care doctors about end-of-life goals were less likely to undergo cardiopulmonary resuscitation (CPR), be put on a ventilator, or end up in an intensive-care unit. Most of them enrolled in hospices. They suffered less, were more physically mobile, and were able to interact with family—and from the time of their end-of-life discussions they lived 25 percent longer than those who did not have them.
I witnessed the benefits of palliative care when my paternal grandmother became very ill with a serious digestive problem and had to have large chunks of her intestine removed. She was taking more than twenty pills per day and was bedridden in a hospital. She lost her appetite and could barely swallow food without the help of a tube. She was already a small woman, but within a few months she dwindled away to a stick figure. She was very proud and hated the indignity of being fed through a tube and having doctors poke and prod her before she had the chance to put some powder on her face.
Noting her distress, her four children consulted and decided to tell the senior doctor that it was time to stop trying to keep her alive with all these pills and tubes. They decided the best thing was to take her home and give her some peace and dignity. If the price was that Grandma would pass away, they had reconciled themselves to her dying sooner. The doctor tried to persuade them otherwise, saying that Grandma would not live more than a few weeks. “At the most,” the doctor said, “she will live two more months.” But her children knew she hated the hospital and my father is very stubborn, so he ignored the doctor’s recommendation and took her home.
They then hired a palliative-care nurse to take care of her at home for her final weeks. Two months passed, and she was far from dead. Instead, she had gained twenty pounds and had cravings for different kinds of food (especially McDonald’s). She became close friends with the nurse and lived on for two years with a much better quality of life than she would have enjoyed in a hospital. For my grandmother, and many others, palliative hospice care often improves quality of life, extends life, and costs less. Yet in order to provide it as a viable option, we need more doctors like Susan Block, who are as good at having conversations with patients about end-of-life choices as surgeons are with scalpels.
Unfortunately, as noted earlier, palliative care as a specialty seems to be shrinking, with doctors choosing more lucrative and prestigious options. Unless this changes, the problem remains that medicine focuses on treating and curing even in situations in which there are no effective treatments and there is no cure. “In other words,” Gawande concludes, “our decision-making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality.”
Besides the benefit of taking them off aggressive treatments, how did a caring nurse help my grandmother? What was it about Cochrane’s hug that helped the Russian soldier stop screaming? And how could Dr. Quinn’s gentle questioning cure Jane’s painful shoulder? There are three possible explanations.
The first way that empathetic doctors can generate better outcomes is by getting patients to give more accurate information. Some illnesses have embarrassing symptoms like diarrhea, vomiting, funny smells, and venereal problems. Sharing these symptoms can be difficult and uncomfortable. For some people, admitting that they have tried alternative cures is embarrassing. A doctor colleague once told me a story about a female patient with advanced thyroid cancer. The disease was so advanced there was not much that could be done for her.
My colleague asked the patient why she didn’t visit earlier, when they might have had a chance to do something. The woman answered that she had used Reiki to treat some symptoms many years before, when the cancer first appeared. She had told her previous doctor at that time, but the doctor laughed and said Reiki healing was crap. The patient was angry and afraid to see any “Western” doctor again. Whether or not you think Reiki is crap, unless the doctor empathizes with the patient and is kind, the patient might well run away from the best available care.
Another way empathetic doctors can improve outcomes is by reducing the patient’s anxiety. We saw in earlier chapters that too much anxiety and stress are bad for us. Empathetic doctors who make us feel that they care about us can help reduce our anxiety and stress. My colleague Professor Paul Little at the University of Southampton recently did a trial in which he proved this. He trained some doctors in a technique he called KEPe Warm. The technique involved
Professor Little then compared the outcomes of almost 100 patients treated by doctors trained in KEPe Warm with almost 100 patients who saw doctors that didn’t use the technique. Those in the KEPe Warm group experienced an average reduction in anxiety of 20 percent greater than those in the control group.
The third way empathetic doctors improve outcomes is by helping to boost the immune system. Being with a trusted doctor can send a powerful message to the body that it is okay to relax and jump-start a full immune response. The immune system uses up a lot of energy. When you are sick and feeling tired, it is not only the disease that makes you feel unwell, it is also because your body is working hard to fight the illness. Because it takes up so much energy, it is not always in your survival interest to evoke a full immune response. If a caveman has an infection, but is alone, it might be dangerous to divert energy to his immune system, which will make him feel tired and cause him pain. If a wild animal or member of a hostile tribe attacks him in this state, he will not be able to defend himself. He might have a better chance of surviving if his body ignores the infection until he reaches the safety of his tribe. Then, once in a tent in his village, surrounded by trusted friends, it will be safe to invoke a full immune response.
Today wild animals are comparatively rare and most of us don’t live in tribes, but the same evolutionary mechanisms are at work. When someone is ill and feels they are being cared for by a trustworthy and reliable doctor, the body gets a message that it is okay for the immune system to operate at full capacity. Most of us have experienced this without necessarily knowing it. While doing exams, preparing to do a driving test, or something else we consider important, subconscious evolutionary mechanisms kick in to avoid the triggering of a full immune response to illness. This allows us to temporarily stave off tiredness and perform until the task at hand is over, at which point we crash and get ill for a few days, because we feel it is safe to do so. The empathetic doctor can make us feel safe and thus trigger the immune system to kick in and do its work.
Just as negative expectations harm, so can unempathetic doctors. Swedish psychologist Karoline Vangronsveld did an experiment in which she trained doctors to communicate with back-pain patients in one of two ways. One group was instructed to look at patients, nod to show they were listening, smile, and say things like “that must have been hard.” Those in the other group were told to glance down at papers while their patients were talking, ignore the patients’ feelings, change the topic, or say things like “not many people report that.” Patients’ pain was reduced more in those seen by the empathetic doctors than those seen by the unempathetic group. These studies show that the words doctors use and the way they treat patients can have positive or negative effects.
The rituals and rites of ancient shamans like Quesalid may seem primitive and even funny to many of us. Doctors these days don’t use eagle-feather tricks to remove demons out of people’s bodies. Today’s doctors have medical treatments, good surgical techniques, and high-tech diagnostic imaging devices that are much more effective than the shaman’s potions and herbs. Medical doctors don’t learn how to trick us—they are trained rigorously in science from accredited universities. They prove this with diplomas on their walls. It would be crazy to say that today’s doctors are simply modern versions of Quesalid.
But it would be just as crazy not to notice the similarities. Some historians claim that modern medicine is just as ritualistic as ancient shamanism. What happens in today’s hospitals is, after all, as mysterious to most of us as shamans were to our ancestors. Most of us don’t understand how drugs or complex medical devices work, and we don’t understand the language doctors use either, whether they are using Latin terms, scientific jargon, or even the plain English equivalent. They say hypertension when they mean high blood pressure; cardiovascular disease when they mean heart problems; upper respiratory tract infection when they mean a cold; syncope when they mean fainting; and epistaxis when they are merely talking about a nosebleed.
Often the language doctors use is further obscured by acronyms (ENT for ear, nose, and throat; MDD for major depressive disorder; and Rx for prescriptions). Today’s obscure medical language, fancy tests, and doctors’ diplomas may have an effect on our psyches similar to that of the shaman’s feathers, rituals, and rites. They both make patients feel that their problems are being taken care of by someone powerful. Does this mean that we should give up on modern medicine and fly to the Brazilian rain forest to find a shaman next time we feel under the weather? No. But you can choose a doctor who will enhance the benefits of modern medicine with their empathetic bedside manner. And, as we’ll see in Chapters 11 and 12, besides reaching out to the right kind of doctor, you will be healthier if you seek and maintain strong connections with friends, family, and social networks.
One of the main tools of modern medical research, the systematic review of randomized trials, is revealing that empathetic and positive communication has the same scientific backing as the latest tests and treatments for many common ailments. Many doctors already harness the healing power of their communication, and some might need a bit of reminding.
If you are a patient, choose a doctor who knows about evidence and who is empathetic—someone you feel understands your circumstances and values, and who you can see cares about you. If you don’t have an empathetic doctor, you are missing out on the healing benefits of empathetic care and you should consider changing doctors. This does not mean you should choose a friendly idiot who can pat you on the back yet knows nothing about evidence. It also doesn’t mean you should choose a doctor who always tells you what you want to hear.
For example, if your competent doctor is sure that you only have a cold and says that you don’t need antibiotics, maybe you don’t, and you should listen. Fortunately, many doctors are both compassionate and familiar with the science of medicine. Finding a compassionate doctor who can communicate well is especially important if you or a loved one is facing the possibility of palliative care or further treatment. It can sometimes be uncomfortable to change doctors, but your health is at stake and the effort is worthwhile.